Disability Issues Panel

CJ Jigsaw: Welcome to those who have just joined us. The next panel starts at 2pmish SL and is the Disability Panel

Gentle Heron: louise/ can you talk abt that?
Good afternoon, and welcome to the panel on SL Disability Peer Support Groups. Our panel consists of representatives (including myself) of varied support groups that function in Second Life and were not set up as a branch of an real life (RL) organization.
I'm going to ask the panelists to respond to a set of questions that will allow you to better understand what it takes to set up, run, and grow an SL peer support group. I'll pause for questions in the middle and at the end of our presentation. Please do NOT IM me with the questions. Please type them into Local Chat.
First, let's each describe our group. Golda Stein is the caretaker of the Dreams Community. Could you please tell us about Dreams and the Brigadoon Explorers and Shockproof groups?

Golda Stein: I will try to be brief, as I could take the whole time telling you about us
Dreams was started by The Sojourner who left us a year ago
She was a stroke survivor and found that being in SL helped her rehabilitation and wanted others to have that opportunity

Josh1 Hawker: hey dwen :)

Golda Stein: Dream Travelers is the umbrella group. We run the organization and support the two groups Brigadoon Travelers and Shockproof
The Brigadoon Explorers are a mainland offshoot from Brigadoon Island and was started in the Fall of 2005 at Dreams. It was created to answer the need for a mainland/accessible sim location for people interested in AS/autism to congregate, become a part of a community, and obtain a support base. It also answered the need for a place where greater numbers of participants could find a "home" base without the restrictions of a closed sim.
ShockProof is a community of stroke survivors and people who have suffered from transient ischemic attacks (TIAs or mini-strokes). It is also for people who have family members with stroke or have an interest in stroke.
This group was started January 29, 2005, and has moved several times, having started on donated land, maintaining a presence on Lane, having meetings at Manua, establishing a home in Luo and now finally a permanent home at Dreams/ShockProof on this island. I feel it is essential to offer new members a place to "be" as well as learn and hold events so that they can join the general community of SL at their own pace.
The overall goal of the group is to provide a place for stroke survivors and non-stroke survivors to play, learn from each other, and to build a sense of community. In addition, we want to educate others about the warning signs of stroke and vascular disease; about the recovery process, and the hope of more tomorrows full of new adventures.
Those were statements from The Sojourner notes
:)
Is that what you were looking for Gentle?

Gentle Heron: yes
Sophia Krell recently accepted the position of head of the ADD/ADHD peer support group. Please tell us about that group, Sophia.

Sophia Krell: Our group in the ADD/ADHD Support Group 2.0. Currently, there are 47 members. We meet twice a week on Mondays and Tuesdays at the discussion area at Dreams East where our group is hosted on the Dreams Sim.

Gentle Heron: Unlike these other two groups, Virtual Ability is a mixed group. Not just mixed in terms of serving people with all kinds of disabilities- physical, mental, emotional, and sensory. Of our almost 300 members, about half are those whom we somewhat jokingly call the not-yet-disabled.
Our group does own land- a public island where we have a Community Gateway new resident orientation facility and an auditorium; our home island; and a residential island. We do not have group meetings per se. Instead, we have parties and classes and lectures and field trips... all kinds of educational and social events.
If anyone wants to learn more about our group and its work in SL, check our website at http://www.VirtualAbility.org or IM me for a notecard.

CJ27 Jigsaw: Pls IM after the session, tks

Gentle Heron: Louise will talk about her work with Max at the end of the panel.
Let's turn to how peer support groups form in SL. We're especially interested in problems getting the group started. Fate, can you address that question please?

Sloan Skjellerup: Gotcha, TY Robin

Gentle Heron:Sophia, what about the beginning of the ADD/ADHD group?

Sophia Krell: There was an original group, but the group owner stopped using SL. Since that owner could not be contacted to switch over the group ownership another was created. The 2.0 Group switched ownership in March of this year and has been active ever since.

Sloan Skjellerup: Wow, I got here just at the right time ...

Gentle Heron: Golda, the Dreams groups have a long SL history. Can you summarize it for us please?

Sloan Skjellerup: <--- sooo ADHD... fun to watch though ;-)

Golda Stein: I think my first ramblings covered it.
I inherited the groups

CJ27 Jigsaw: Did you hv any trouble setting up the group Golda?

Gentle Heron: any trouble setting up the group?

Golda Stein: So it is more of a continuation of what is currently there
The Brigadoon Travelers is handled by Airial Miranda as the moderator
Shockproof, the stroke group, has been a long term problem with having interest in meetings
Even back with Soj (the sojourner) they didn't seem to have the interest in a support group

Gentle Heron: Any issues in that transition? From one leader to several?

Golda Stein: The issues were more about the main group, Dream Travelers
the support groups were more like, as long as we can continue it is fine
Of course everyone misses our leader
:)

Josh1 Hawker: nods

CJ27 Jigsaw: Leader was Sojourner

Gentle Heron: The Virtual Ability group grew from a smaller peer support group that was more involved with bringing people into SL than it was with providing any services to them.
Compared to our beginnings, we are now more formalized. We created a real world corporation to support our work in Second Life. we may be the first SL group to form an RL corporation.
Our functions are also broader, providing educational and social functions that bind our members together as a community. Further, we are more firmly embedded in the wider SL support environment than we were initially.
Of course, finding members is important at the beginning of a group's existence. Sophia, how did the ADD group begin to grow?

Sophia Krell: We have a poster at the entry point of Dreams sim advertising our group, but mostly new members are obtained by word of mouth.

Gentle Heron: Golda, I know Dreams continues to grow. How does that happen?

Golda Stein: Part of the support for shockproof and brigadoon explorers come from Dream Travelers
We have a sandbox which is popular because of the strict rules we enforce
We have building classes

Sloan Skjellerup: ADHD is a virtue here in VCE's

Golda Stein: We have building contests from texturing contests, speed build, monthly builds and now Prim Charades
We sponsor a health and education community fair which is a yearly event
And our new project is building a walk through brain which was a Dream Soj had - a project just started prior to her passing.

Glitteractica Cookie: so cool- awalk through brian!

Golda Stein: We were able to do it bigger as the brain has its own island, The Sojourners Deam
We plan to have regular lectures on the brain once it is complete.
We are lucky in that we are a sim of builders - and will do the work ourselves
Many of our builders have worked on other projects in SL including VAI
We now are also including more recreational activities for those who are not into building

cowgrl Crystal: That's exciting Golda, I'd love to show my Narcolepsy Group your walk thru brain when it complete. :)

Golda Stein: We allow those with strokes to be like anyone else
We have no distinction between our members with strokes or aspies
We accept all
:)

Gentle Heron: In the beginning of Virtual Ability, we grew strictly by word of mouth. Now we use a variety of methods to bring new members into SL.
We've talked with large inworld groups such as the SecondAbility Mentors and NonProfit Commons to let them know that if someone approaches them with an accessibility issue, we're available to help.
Our work has been featured in SL publications, on SL television, and recently in real world television, videos, and publications. Not only are we seeing articles in the popular press, but also in specialty journals and even research articles. All those make people aware of our group.
**Any quick questions from the audience about how peer support groups begin in SL before we go on? Please type in Chat.

CJ27 Jigsaw: Any questions?

In Kenzo: SL seems to appeal to the ADHD community and I'm wondering if age is a factor in low attendance for stroke survivors group.

Gentle Heron: Golda?

Golda Stein: I really don't think so. I am not young. My daughter is my co manager
and she is the mother of an autistic

Sophia Krell: May I add to that?

Golda Stein: that makes me a grandmother

Gentle Heron: Sophia? yes

Golda Stein: Others in our group are in my generation
but we are young at heart

Sophia Krell: The ages of our members varies from 60 to 18.

Gentle Heron: Let's talk about our groups as they are functioning now. The Dreams group has faced some enormous challenges. Its iconic founder, The Sojourner, died last year. Golda, how is Dreams working now?

Golda Stein: Well, it keeps me busy. Too busy
We have new members and are developing a great base of leaders
Some of those who left because of the unexpected change of command are coming back
We definately are growing
2 sims to 3
more activities
and more inter communication with members and non memebers
In my plans is a group for older adults who are facing the challenge of keeping their brains active past 60
AAADD Adult activated attention deficet disorder
So pulse wise we are going strong
:)

Gentle Heron: Sophia took over the ADD group at the end of the pregnancy of the member who had been running it temporarily. Your group seems to be quite active now. How are things going, Sophia?

Sophia Krell: I feel our group functionions fairly well. We hold two meetings a week and attendence averages about 5 people per meeting. Meeting topics are as varied as our ADD/ADHD minds will allow for.

Gentle Heron: What works well for you?

Ludo Merit: ((which is plenty))

Sophia Krell: sorry
I send out reminders for meetings.

CJ27 Jigsaw: What works well in running this group?

Gentle Heron: What are the group's problems?

Sophia Krell: Constant reminders

Golda Stein: She is a good leader

Sophia Krell: I am a new group leader, so we are still getting to know each other. Plus, SL is an escape for most of us, so it is difficult getting people who want to discuss their RL issues.

Gentle Heron: What could be done to help the group work better?

Sophia Krell: To make the group work better we would like hold more group events in addition to meetings to create more group comradery. Personal communication with each member seems to be a successful component to this as well.

Golda Stein: I am happy to see that some of the members of that group are becoming active with the other activites on Dreams

Gentle Heron: The Virtual Ability group is also doing well. We continue to use a model of distributed two-deep leadership. This means that the work is accomplished by task groups headed by co-leaders who serve as each other's back-up.
Like most groups, still the majority of our members are less active, participating in events organized by others. Our management has ambitious plans, but we realize that sometimes we must just bide our time.
We're all volunteers, there are no paid staff in SL or RL. So we work toward our long term goals as we find the people with the skill and desire to accomplish the necessary tasks.
Let's turn now to the future of these groups
What about the ADD group, Sophia?

Sophia Krell: The group has grown by at least 5 mmbers since March.
As SL grows, so should we.

Gentle Heron: What could be done to help your group grow?

Sophia Krell: We need to do more education about ADD & ADHD in SL and reach wider audiences.

Gentle Heron: What's the future of the Dreams groups, Golda?

Golda Stein: We will keep plugging away at our current program
We have been reevaluating what works and what isn't working
We are working on ideas to reach our shockproof community and hope that a series of talks on strokes would be more beneficial
Also, I would like to open the island to other groups that would be in the Braintalk community to come under our umbrella as a place to call home
Braintalk is an online forumn founded by John Lester
who we know better as Pathfinder Linden
:)

Gentle Heron: The Virtual Ability group is growing in several ways. We are increasing in membership, our land holdings are increasing, the services we offer our members are enhanced, and we're garnering more awareness of disability access issues in virtual worlds.
We believe in our mission, so of course we believe our group should grow. Our caution is to not outgrow our current and near-future capabilities.
We're almost to the end of our panel. I'd like to ask the panelists what advice they'd give to someone starting a SL peer support group for people with a chronic health condition or a disability.
Sophia, what are your suggestions?

Sophia Krell: I recommend attending meetings for other support groups and get advice from their group leaders. Recreating the wheel is tiresome!

Gentle Heron: Golda, what can you add?

Golda Stein: Don't expect everyone to come running to you.
Remember that everyone is still part of a real world and many can not spend the time and energy on SL that we would like
Be flexible
and friendly and accepting
:0

Gentle Heron: I'll skip my response. I think we've time for a few audience questions.

Golda Stein: :)

CJ27 Jigsaw: Questions from the audience?

Timm Short: What types of disbilities Does dream Envision coming there

Gentle Heron: no

Golda Stein: no

Sophia Krell: I have not either.

CJ27 Jigsaw: Hv u ever used live streaming or YouTube via SL?

Glitteractica Cookie: We have a question in the room in San Jose about the Linden Prize and what your project was

Ludo Merit: Someone on AG uses One Minute Shifts.

CJ27 Jigsaw: Hv u ever seen individuals initiating RL support groups as a result of SL activities?

Golda Stein: we have a few who are talking about joining such groups

Sophia Krell: Our group is being discussed in college classes.

Golda Stein: but not starting

Glitteractica Cookie: We have a question in the room in San Jose about the Linden Prize and what your project was
specifically, what about Virtual Ability?
what were the specifics of your grant

Louise Later: Great!

Glitteractica Cookie: hooray

Louise Later: Today you have heard about Virtual Ability, Dreams, and
AAADD. These are wonderful support groups.
I am from another group called Virtual Helping Hands.
see ourselves as activists
play the activitst role to ensure everyone have big three e's
Employment, education and entertainment in RL
Helping hands reaching out to world, coalition of 4 groups
SecondAbility Mentors, Accessible Builds, Wheelies, and Max the VHH Virtual Guidedog, to provide inclusion for all.

Glitteractica Cookie: w00t! virtual guide dogs!

Louise Later: With pathfinder linden, VHH will be sponsioring a special day in SL
Helen Keller Day June 27th - for full 24 hours on four full sims
Focus of that day to include everyone by using SL
If you would like to be a sponsor, volunteer or other particiaption - Robin Roar is person to contact
Find out more about group at www.virtualguidedog.org.
Focus of day, have people with visual impariments to use SL
but also everyone can use SL
Imp to realize every 5 min a child goes blind and someone goes deaf
those people need to find new ways to find employment, education and entertainment
those stats from World Health Org
Need special tools for a blind person to use SL,
A free program to read the Second Life™ Chat aloud for both PCs and Macs can be downloaded from
www.virtualguidedog.org/tools

Sloan Skjellerup: oh cool!

Louise Later: You can get a free accessible device from :Wheelies
Max, virutal guidedog standing next to Louise
also have the tech as a ring if you want yr disablilty confidential
and have other ways - use the tech with any device that goes with your avator

CJ27 Jigsaw: contact Charles Mountain about being able to use tech to access SL

CJ27 Jigsaw: Any questions for Louise?

CJ27 Jigsaw: Louise is legally blind in RL

Louise Later: Jolie1 Magic and twin sister in SL who is also completely blind Jolie 1 Magic

Karen Salamander: beta testers are legally blind

Talvin Muircastle: And she is sitting off to my right.
Pardon, behind me.

CJ27 Jigsaw: Others who are completely blind who are testing SL right now to find out how we can make it easier
Any other questions?

cowgrl Crystal: If I meet someone in class who could use this do I refer them to you?

Louise Later: SLURL for Wheelies is taupo 169, 90. 23

Glitteractica Cookie: i have a question-- does the dog descrbe as well? I have heard about one that does

Karen Salamander: difficult to use SL when blind - technology will make a difference & social impact

Glitteractica Cookie: not just read chat

Louise Later: Max (the dog) or rather the device reads script
and has radar around to see who is around me
can move to that person and tp in SL with diff commands
hv separate program, Marco Polo, script placed in any object you built
puts notecard with words in it in each object, ex "this is elevator"
When you get close to an object which has Polo script, the notescript will come up for the tool

Daisyblue Hefferman: how can we get a copy of the marco polo scripts?

Glitteractica Cookie: so cool

CJ27 Jigsaw: Can you put the link in pls?

Louise Later: www.virtualguidedog.org/tools

Glitteractica Cookie: lions club affilliation?
louise, can you talk abt that?

Sloan Skjellerup: *•.¸'*•.¸ ? ¸.•*´¸.•*
Sloan Skjellerup: .•*?¨`• BRAVO!!!! •¨`?*•.
Sloan Skjellerup: ¸.•*`¸.•*´ ? `*•.¸`*•.¸

Karen Salamander: 5 people helping with project are blind - deserve credit for progress

Serene Jewell: applause!!!!

CJ27 Jigsaw: Thanks Louise!

Thanks to everyone for your interest.

cowgrl Crystal: yeah!!!!!!! Applause!!!!!!!

CJ27 Jigsaw: APPLAUSE!!

Glitteractica Cookie: Thanks to the virtual ability group!

Serene Jewell: Thank you all so much

Jeska Linden: Thanks everyone!

Sloan Skjellerup: Nice job !

Rhiannon Chatnoir: bravo

Golda Stein: :)

Kasuku Magic: Thank you