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Ability Commons

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Ability Commons is a joint effort of the Health Support Coalition: multiple inworld groups supporting people with disabilities, helping each other to find their way inworld and contribute to Second Life.

Principal Organizations

=== Virtual Ability Inc. ===
=== MDSLA ===
This support group has 15 members dealing with one of the over 40 different forms of muscular dystrophy.
=== SPED – ISLE===
Educators of people with special education needs, dedicated to “researching, developing, and supporting implementation of solutions that can make Second Life's immersive environment accessible to people with sensory and motor disabilities.”

=== Crohn's and Colitis Support ===
=== Irritable Bowel Syndrome ===
=== Open Gates Peer Support Community ===
Perplexity Peccable representing Let’s Face It- This support group’s members work to “advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.” People with facial differences are often discriminated against in RL based on their appearances. In SL, these physical characteristics can be eliminated so that the people behind the avatars can interact socially without discrimination. This group has 14 members.

Roberto Salubrius representing the Agoraphobia Support Group- This support group assists individuals who have an anxiety disorder that causes them to panic in public or unfamiliar places. Roberto says, “The groups are to remind each other that we are not alone. There's always someone that lives the same as you do.” There are 34 members in this group.

Yosemite Aero representing Chairwomen- This support group is for “women who use wheelchairs in RL, for whatever reason, to socialize and provide mutual support.” Yosemite comments, “We really have not had any organized programs. But that could change with an organized meeting place.” There are presently 41 members in this group.


Proposal to Annenberg Foundation

Name of Project: The Ability Commons

Avatar and/or name of primary applicant: Health Support Coalition- Gentle Heron and Carolina Keats, administrators

Narrative

1. Summarize your idea and vision for this project. How does it utilize the unique features of a virtual world?

Imagine a paralyzed 23-year-old lying in his family’s back bedroom, yearning for contact with age peers in similar situations. SL offers people with serious physical and cognitive disabilities opportunities to socialize and get information, often through one or more of the over 70 SL health support groups.

Some support groups are inworld entities of RL organizations, with means to finance identifiable “homes.” These well-supported groups flourish and grow. Smaller support groups struggle to exist and promote their presence, and often fail to thrive. As many as half of identified SL health support groups may fall into this category.

The Health Support Coalition and partners propose an “Ability Commons,” similar to the Nonprofit Commons, that provides a home presence for smaller and emerging SL health support groups. The Commons will also provide shared meeting spaces and enable these smaller groups to network and offer mutual support.


We believe that community is the goal of Second Life, and intend to use SL’s networking capabilities to reach beyond RL limitations of geography and health, enhancing awareness within – and beyond - the SL community of support for people with disabilities.


2. Who is your intended audience and who will participate directly?


Primary audiences of this project are the small and emerging SL support groups for people with disabilities and chronic health issues. The Health Support Coalition currently represents approximately 30 SL support groups. Of those, about a third (including the Agoraphobia Support Group, Open Gates Peer Support Community, and Let’s Face It) are small and do not have a place to call “home.” Many others, not yet members of the Coalition, are also small and landless. Leaders of small and emerging support groups and of other groups that could provide services to them have expressed interest in working on this project and are listed in the Project Team section.


In addition to primary audiences, significant secondary audiences exist. Individual members of each support group will be better served since groups will be more likely to endure and provide appropriate services to members. As the groups will be collected in one site, caregivers, health-care professionals, researchers, educators, and the general public will directly benefit from information that is more easily available at the Ability Commons. Further audiences may include members of the press and charitable health-related organizations.

3. What is the scope of your endeavor and what would you most like to accomplish?

Ability Commons will be a one-stop island “home” for smaller and emerging support groups. In addition to those groups identified through their membership in the Coalition, it is likely that many non-Coalition health support groups will participate. Therefore, with room for expansion as new support groups emerge, this island will be designed for approximately 40 small groups. It will be landscaped as a series of structures connected by paved level pathways, similar to the NonProfit Commons. These structures will be variously-styled, accessible storefronts. Centrally located headquarters for the administrative groups, shared small- and medium-sized meeting rooms, and an accessible auditorium will complete the space. Administrative organizations will assist the support groups in forming and planning for maintenance, and will collaborate with them to offer scheduled presentations and provide validated information.

The proposed Ability Commons will enable new health support groups and strengthen smaller existing ones. Support groups provide valuable services to members such as:

   * Peer support among those who share similar conditions.
* Encouragement to stay in SL and participate in virtual reality.
(Research-supported benefits documented in published studies are summarized at http://www.virtualability.org)
* Opportunities to socialize and share information.
* A voice within the larger SL community.

4. What *public good* benefits do you see created through your proposed endeavor?

We aim to provide social justice for a category of people who experience extreme oppression in Real Life. For us, this is the meaning of “public good.” Participating in SL is difficult for people with disabilities, who need additional social and educational supports beyond those usually offered. Support groups offer those kinds of support, but not all support groups can do this well. Aiding smaller support groups means more potential group members receive benefits.

Large support groups are often aided by either a national organization (e.g., the American Cancer Society) or a foundation (e.g., the Boomer Esiason Foundation). They usually have adequate resources to function well and maintain themselves. Smaller groups need assistance. This grant’s purpose is to level the playing field a bit for these small groups and to serve as an incubator for those just emerging. The disabled are a diverse group, so their support systems should be similarly diverse. The disabled population is not adequately served only through the large organizations; smaller ones are necessary.

Equally important, publicity generated by the Ability Commons will benefit all people with disabilities by bringing attention to those with chronic illness or disability as important elements of the SL community.


5. At the end of this challenge, what "real world" impact will you measure as your basis for success?


Real world direct outcome impact will be measured by quantitative metrics of tenant groups such as: numbers of supported groups, growth in membership within these groups, and attendance at events sponsored by participating groups. We also expect closer ties between SL support groups and RL organizations, as reported by SL support group leaders.

Qualitative metrics will include descriptions of services provided by Ability Commons as a whole and by administrative partner organizations to tenants, including voluntary questionnaires to tenant members about educational aspects of the support group and the enhancement of the functioning of their group.

6. Do you, or your team have a solid track record and positive success stories in Second Life or other virtual spaces?

The Health Support Coalition, an SL group of leaders of support groups for people with health or disability challenges, was formed by The Sojourner, Carolina Keats, and Gentle Heron to address:

   * Sustaining existing support groups
* Facilitating growth of new groups
* Sharing service and event information among groups


The Coalition has assisted member groups to create various outreach products (posters, informational notecards). It has informed its members about collected information on SL support groups (Path of Support, SLHealthy wiki).


The Coalition assisted SLang Life with a day-long health care event on February 9, 2008. Members of the Coalition presented to a general audience. Transcripts of these presentations formed the basis of the spring issue of Slang Life (SL/RL) magazine.


Members of the Health Support coalition as individuals have participated in SL in a variety of ways. Carolina Keats directs activities on HealthInfo Island, including the Consumer Health Library and Acccessibility Center. Gentle Heron is a co-founder of the Heron Sanctuary and president of its RL parent, Virtual Ability, Inc. Both are involved in creating a disability-supporting Orientation Facility on Virtual Ability Island. Leaders of smaller support groups and allied organizations are described in the Project Team section.

Budget

Include a list of in-world resources required to complete the Community Challenge within a three-month timeframe, including land. Be specific about how you would spend the L$100,000 per month for the three months award for this project.


The Ability Commons project will require donation of an island and the first three months of tier payment. The two islands now used by the NonProfit Commons house, respectively, 32 organizations on the first island and 44 on the second. To adequately serve the existing and planned smaller SL disability support groups, space equivalent to a full island is necessary. The advantage of placing these all on a single site is that the group as a whole can advertise its members’ services to SL residents. The Ability Commons’ strong presence can help focus charitable efforts.

Of the cash award, we would use L$100,000 to purchase accessible storefront office buildings, meeting spaces, an auditorium, plants, and textures necessary to create a welcoming environment. We would use donated and freely available materials whenever possible. However, we will not compromise on two features: accessibility and quality.

The remaining L$200,000 will purchase approximately 40 hours at approximately $US20/hour of services from a professional designer/builder. Again, we may be able to get some of this work done as a donation, but we want to maintain the quality and overall professional appearance of the project build.

Ongoing costs are minimal. No paid staff are proposed for this project. The only continuing cost is monthly tier. This is the reason for the listed task (3a) of finding and applying for a grant to cover that expense. By establishing a viable presence within SL, our project will attract funding for continuation of this worthwhile effort. Additional sources of revenue will include donation kiosks and fund-raising events such as charity dances or concerts. Additionally, as small groups are supported and encouraged to connect to their corresponding national organizations, the possibility of sustaining funding from RL sources increases.

Time Line

Target dates for project milestones between July 16th through October 16, 2008 with clear benchmarks to measure success.


1. Island Preparation

  1. procure island
2. initial layout of island
3. island preparation- terraforming
4. set up paths
5. island build- acquire and install pre-made offices, meeting spaces, auditorium (to be completed by early September)
6. finalize build- landscaping and cleanup (to be completed by mid-September)

2. Tenant Preparation

a. identify potential tenant health support groups (July 31)

b. contact potential tenants (August 8)

c. conduct application process

d. accept tenants (August 22)

e. assist tenant move-in (mid-September)

f. prepare for and conduct SL opening event to introduce tenant groups to SL (early October)

3. ongoing services to tenants

a. identify and apply for $3150 grant to pay tier for two full years of operation through July 2010 (early October)

b. plan for and conduct first administrative event, such as speaker on fundraising (early October)

Project Team

List team members, including any additional sponsors, partners, funders or allies to be associated with this project. Include any applicable information you would like to have considered, such as brief bios of participants, existing in-world locations or groups, existing URLs related to this project, or photos, videos, or other supplemental materials.

Health Support Coalition- The Coalition is a collaborative SL group that serves as a “means of sharing information, supporting each other in keeping groups viable, and assisting new groups to get their footing.” Officers include Carolina Keats and Gentle Heron. This SL group has 41 members who head different SL support groups on health or disability topics.

The following members of the Health Support coalition will be involved in running this project:

Carolina Keats (RL: Carol Perrryman, a consumer health librarian) representing HealthInfo Island - HealthInfo Island houses a medical library, a consumer health library, and other health information organizations. Medical and consumer health librarians are available to help all SL residents find reliable information on a variety of topics. Displays at the Accessibility Center museum currently focus on mobility, vision, hearing, and learning impairments and accessibility.


Gentle Heron (RL: Alice Krueger, an educational researcher with MS) representing Virtual Ability, Inc.- VAI is a nonprofit organization that has run The Heron Sanctuary project in SL and, together with the Alliance Library System, will open a disability-supportive Orientation and Training Facility in July. These services offer personalized support to people with disabilities to allow them to come into SL and then to participate more fully in SL culture.


The following leaders of existing support groups within the Coalition have expressed support for this project, and are eager to participate:

Ensign Barkley representing MDSLA- This support group includes individuals dealing with one of the over 40 different forms of muscular dystrophy. Ensign states, “We do not have group land as is for meetings and such.” It currently has 15 members.

Kallisto Ihnen representing SPED – ISLE- This support group’s members are educators of people with special education needs. They are dedicated to “researching, developing, and supporting implementation of solutions that can make Second Life's immersive environment accessible to people with sensory and motor disabilities.” Of her group, Kallisto comments, “We do not have a permanent home.” There are presently three members of this group.

KirstenAnn Beck representing both the Crohn's and Colitis Support group and the IBS or Irritable Bowel Syndrome support group- Both groups include people with a variety of gastrointestinal illnesses. Commenting on this project, KirstenAnn says, “Sounds good to me!” The first group has 25 members and the second has 10.

Namav Abramovic and Kat Klata representing Open Gates Peer Support Community- This support group provides 24/7 peer support to anyone with a disability. Help is available as open chat, IM, or av-to-av conversation. Peer support exists in many forms in SL, but this group offers peers who are disabled and can therefore understand some of the complicating factors involved. “Put us down please. Sounds good,” was Namav’s response to being asked to participate in this project. There are two hosts and 47 members who have received services.

Perplexity Peccable representing Let’s Face It- This support group’s members work to “advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.” People with facial differences are often discriminated against in RL based on their appearances. In SL, these physical characteristics can be eliminated so that the people behind the avatars can interact socially without discrimination. This group has 14 members.

Roberto Salubrius representing the Agoraphobia Support Group- This support group assists individuals who have an anxiety disorder that causes them to panic in public or unfamiliar places. Roberto says, “The groups are to remind each other that we are not alone. There's always someone that lives the same as you do.” There are 34 members in this group.

Yosemite Aero representing Chairwomen- This support group is for “women who use wheelchairs in RL, for whatever reason, to socialize and provide mutual support.” Yosemite comments, “We really have not had any organized programs. But that could change with an organized meeting place.” There are presently 41 members in this group.


The following potential leaders of emerging support groups have expressed interest in becoming Coalition members and receiving assistance in setting up their groups:

Anderson Urqhart would like to set up an epilepsy support group in SL, and has come to the Coalition seeking assistance to do this. Anderson has been epileptic for ten years and has “valued the support [he has] received from others who have experience of epilepsy.” His planned support group would be available to both epileptic people and their carers and supporters. Anderson says, “Carers/supporters need support as well as the person with epilepsy. Second Life makes for a safe environment in which to get support.”

Buteo Rutan (of Ophoenix Public Benefit Corporation) plans to set up a support group for people with SCI (spinal cord injury) issues, and has asked for Coalition assistance. Buteo offered, “We would appreciate and use any space you provide us on your proposed island. One consideration for the support group involves confidentiality, and we are happy to work with you on designing and implementing a secure, private meeting space.”

The following leaders of supportive organizations related to health and disability issues have expressed support for this project, and are willing to provide assistance to small and emerging SL support groups:

Gabrielli Rossini representing the Virtual Ability Research Group- The purpose of the Research Group is to “encourage, promote, support and disseminate sound research activities within disabilities communities in Second Life.” In RL, Dr. Robert Vernon (http://hsmedia.biz) is a professor of social work at Indiana University. He has taken two of his classes inworld for research projects. His work has been noted in U.S. News and World Report and the New York Times. He has a national reputation in social work education and in technology. Graduate student members of the Virtual Ability Research Group will be encouraged to evaluate the functioning and success of Ability Commons as a whole and as component organizations as research projects.

Ren Stonecutter representing Health Education Consultants- This is a group of licensed and certificated health care professionals (MDs, RNs, LCSWs, psychologists, psychiatrists, Assistive Technology Practitioners, Occupational Therapists, Physical Therapists, etc.) who “provide medical education, support, and general consultation to individuals and groups.” Members “refrain from clinical practice, except where permissible,” and provide free services within SL In RL, Ren is a family practice physician...an assistant visiting professor of family medicine. He is well-known in SL for his numerous educational presentations to a variety of groups addressing health care issues for the general public. He also heads the Second Life Medical Association. Members of this group will offer scheduled presentations on topics of interest to support group tenants.

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