Monday, December 01, 2008

Second Life Celebrates World AIDS Day with New Island

Picture taken by Verde Otaared

Thanks to a generous grant from the National Library of Medicine and the tremendous support of the Alliance Library System as grant administrator, a brand new island dedicated to HIV/AIDS education, outreach, and support will open in Second Life on December 1 - World AIDS Day, 2008.

Please join us at
Note that the island will be open to the public on that day.

Christened Karuna, a word taken from an early Indo-Aryan language, the name of the island embodies the desire to remove harm and suffering, and to bring about the well-being and happiness of others.

Karuna team members include AIDS/HIV support group leaders as well as AIDS content information experts and educators, ensuring that the best, most recent, evidence-based information is available. The project objective is to empower individuals in healthcare decision making. Through this project, one-to-one health information reference services are provided by experienced medical and consumer health librarians.

In addition to providing infomation resources, support, and networking opportunities, Karuna is built around a Garden of Experience, where the experiences of those dealing with HIV/AIDS will be shared in a variety of formats including poetry, photos, music, and video. For more information about this project, see

We are proud to be working with other organizations in this effort, including, the University of North Carolina Center for AIDS research, Community Outreach, Dissemination, and Education Office (CFAR), and most recently, by the National Institute on Drug Abuse (NIDA).

Together, we work to ensure that the idea of community is foremost. Individuals are at the heart of Karuna, and it is through sharing tales and human connections that we find our best selves.

All times listed are Pacific Standard Times
Note that the island will be open to the public on that day

10-10:10 Story to Live By (Jenaia Morane)
10:10-10:20 AIDS/HIV Support & Experience (Ricken Flow)
10:20-30 Health in Second Life (Pathfinder Linden)
10:30-10:40 HIV/AIDS in the U.S. (Miguelz Rajal & Ellechim Fizzle)
10:40-10:50 Karuna: The Grant and the Vision (Carolina Keats )
10:50-11:00 Questions and Answers
11:10 – 11:45 Tours of Karuna
11:45 – 1:00 Lunch break
1:00 – 3:00 Story writing workshop and posting of stories
5:00-5:15 Closing Ceremony – Candle of Hope is lit
6:00 – 8:00 Dance with live DJ
8:00 – 9:00 Music: Live performance by Cylindrian Rutabaga

Sunday, November 02, 2008

Please support our project bid!

Info+ Alliance: Providing accurate, quality and timely sex health information using innovative ICTs

Please help us by taking the time to view, rate, and comment on our preliminary project description. It is our intent to create an innovative application for fact-checking media reports around sexual health, including HIV/AIDS by working in collaboration with experts in Second Life, North Carolina, Illinois, New York, Australia, and India. The idea and collaboration has sprung from relationships in Second Life, and intends to benefit both SL and RL communities.

You'll see basic information about the proposed project on the following link, and depending upon ratings, we'll be invited to submit a more complete application.

Please go here to see and rate our proposal. Your comments are also greatly appreciated, since these may affect the decision as much or more as the ratings.

from one of the accompanying documents:

Working in partnership with Alliance Library System in Illinois and in collaboration with the Journalism and Media Research Centre, University of New South Wales (Australia) and the University of North Carolina Center for AIDS research, Community Outreach, Dissemination, and Education Office (CFAR), the Info+ Alliance brings together internationally recognised experts in journalism, sex health education, health information provision, cultural studies, media arts and computer programming across three countries.

Thank you for your support!!

Carolina Keats
Coordinator, Healthinfo Island and Karuna projects

Monday, October 20, 2008

Virtual Worlds, Real Libraries: Innovators Describe Pioneering Library and Educational Projects in Second Life and Other Virtual Environments

We are pleased to say that a new book was announced today! Namro (Guus van den Brekel)and myself (Carol Perryman) wrote one of the chapters in this work, whihc was most ably coordinated and edited by Lori Bell and Rhonda Trueman.

For the entire text of the release, see

By RobColding - Posted on 16 October 2008

October 20, 2008, Monterey, CA—At the 12th annual Internet Librarian Conference and Exhibition, Information Today, Inc. (ITI) announced the publication of Virtual Worlds, Real Libraries: Librarians and Educators in Second Life and Other Multi-User Virtual Environments, edited by Lori Bell and Rhonda B. Trueman.

Eighty percent of Internet users are expected to engage in some form of virtual world activity by 2011 (Gartner Research Group), and librarians and educators are already there. Virtual Worlds, Real Libraries—the brainchild of editors Bell and Trueman—is designed to help libraries and schools recognize the importance of multi-user virtual environments (MUVEs) and consider ways of getting involved as they proliferate. The editors and 24 contributors describe innovative library, educational, and cultural projects they have undertaken. They recount their experiences working together to succeed in Second Life and other virtual worlds and explain how traditional library services such as reference, teaching, collections, discussion groups, and young adult programs can be applied in a virtual environment.

Monday, October 13, 2008

PubMed for YOU: Searching for Medical information

PubMed for YOU: Searching for Medical Information

October 14
PubMed for YOU: Searching for Medical information
Healthinfo Island Classroom area
11:00 a.m. - 12:30 p.m. SL time
Prerequisites: Curiosity and an interest in searching for health information

Join us on Healthinfo Island for a hands-on opportunity to learn how you (yes, you!) can search the PubMed database. No need for prior experience - it's all about checking out one of the greatest informational resources we have, free on the Internet. Questions? Contact Carolina Keats inworld.

Saturday, September 27, 2008

AIDS Information and Outreach in the Virtual World of Second Life

The Alliance Library System (ALS) is pleased to announce that the National Library of Medicine has awarded ALS a $60,000 grant for a project entitled "AIDS Information and Outreach in the Virtual World of Second Life." The project includes the creation of a new island with a community AIDS/HIV library/resource center. The resource center will provide information support and outreach to the Second Life community and beyond about AIDS/HIV and its prevention. The new island will also be home to a garden space where narratives about the AIDS/HIV experience can be shared through art, audio, video, poetry, essays, and more. The project runs from October 1, 2008 – March 31, 2010.

This is the fourth grant awarded to ALS for the provision of consumer health information in Second Life, and will also fund a continuation of current efforts. The project coordinator will be Carol Perryman, known inworld as Carolina Keats.

For more information on the Alliance Library System, please see or contact Lori Bell at, or in Second Life as Lorelei Junot.

For more information about this project, please contact Carol Perryman at or in Second Life as Carolina Keats.

Friday, September 26, 2008

Healthcare Education group event

A truly interesting and even motivational event, and I'm not just saying that because I had some small part in it. Pathfinder Linden spoke to a group of ~30 healthcare folks at the new Health EduIsland, expressing his strong interest in, and advocacy of, health and health education efforts in Second Life. I love the thought that this group constitutes evidence of the continued development of SL as a platform, moving toward exploiting the networking capabilities of virtual worlds to share experiences and grow together. That's sure what it's about, isn't it?

Sunday, September 21, 2008

Plans afoot - Health EduIsland

Next Friday the Healthcare Education group will be meeting in their new space for the first time! Planned as an 'ahoy maties!' pirate-themed party, we'll take a look around and talk about plans for the use of this large chunk of space, deciding how it can best be used to meet our objectives. You're invited to attend!

Saturday, September 13, 2008

Announcing..... Health EduIsland!

To the immediate south of Healthinfo Island, please note a new green space, currently furnished only by the sign you see above. Intended as a gathering space for the health community, we will be making the auditorium (which is to be the centerpiece of the island) available to all health groups through a calendaring system. We're excited to be able to host the upcoming Stepping into Health conference here, as well as the next World AIDS Day, and have offered space to the new Healthcare Education group for meetings and displays.

Contact Carolina Keats for further information

Friday, September 12, 2008

"Stepping into Health" becomes Third in Popular "Stepping into Virtual Worlds" Series

Using virtual worlds to promote health and healthcare is the topic of the next installment of the popular "Stepping into Virtual Worlds" conference series, to be offered October 7th, 2008 in Second Life. Hundreds of people have attended this series, which began with "Stepping into History" in June and continued with "Stepping into Literature" in August. The series is sponsored by Alliance Library System and LearningTimes. The day-long conference is open to the public, with more information available at It will take place entirely in the virtual world of Second Life.

During this conference, participants will make virtual "field trips" to some of the best and most creative locations that are using virtual worlds to promote health. During these field trips, they will be able to speak with those responsible for creating the simulations, and have time to explore them on their own. Among the field trips for this conference are Healthinfo Island, a health education simulation where visitors can test their knowledge of strokes by walking through a giant artery and destroying clots by correctly answering questions, and ToxTown, a typical American town where potentially dangerous chemicals can easily be seen.

In addition to the field trips, the conference includes:

  • Keynote presentations by Randy Hinrichs, founder of 2B3D and developer of the "Medipelago," a group of health related simulations in Second Life; and Ramesh Ramloll, creator of Play2Train, a virtual world simulator used to prepare healthcare professionals and others for crisis situations
  • Table Talks on subjects such as "Healthcare Education and Advocacy in Virtual Worlds," "Virtual World Health Librarianship" and "Using Virtual World for Training Medical Personnel."
  • A panel discussion, allowing participants to question and interact with a variety of experts in the use of virtual worlds in health and healthcare.

Alliance Library System, co-sponsor of the "Stepping Into" series, is a multi-type library system headquartered in East Peoria, Illinois. Alliance has been a leader in developing ways for libraries to expand their missions and serve patrons in virtual worlds. Alliance is on the web at

LearningTimes, the second co-sponsor, is the leading producer of online communities and online conferences for education and training. Their clients and partners include educational and cultural institutions, non-profit organizations, associations and membership groups. LearningTimes provides the training, platforms, applications and expertise these organizations need to make their conferences a success. More information about LearningTimes can be found at

The cost for this day-long conference is $79, and participants may register for the conference at

Sunday, August 31, 2008

I take this one personally

Nearly 8 years ago I finally did what I had been dreading for 29 years: I stopped smoking. The journey to cessation was amazing and life-altering, entailing lots of learning. I didn't just learn about what smoking does to bodies, but about my own fears and anxieties around cessation, and how important a community of support is in change.

You could say that this class was more than 8 years in the making. I will be telling (briefly!) my own story, but also asking for your own experience. Without pressure, I'll also share a few good resources so when you're ready, you'll know where to find good info on medications, community support, and more (and who knows, we may even begin our own smoking cessation support group).

Second Life is a community. Let's come together for health!

Carolina Keats

Thursday, August 28, 2008

Notecard text:
Consumer Health Information at Healthinfo Island: The Workshop

Have you always wanted to learn more about consumer health information services? Join us on Wednesday, September 3 at 11:00 a.m. SL time for a one hour hands-on class!

Location is on Healthinfo Island in the classroom area:

This is intended for
you, if you:
  • have little or no experience with consumer health information
  • are interested in joining the active SL Health Librarians group, including helping to provide coverage on Healthinfo Island for tours and other activities
Expect to walk (or fly!) away with a basic awareness of the following:
  • Reference skills (what do I need to remember? What are some dos and dont's?)
  • Basic resources: links and tips
  • Health information literacy - and and easy way to measure content for readability
  • Credibility in a virtual environment: Resource quality evaluation, transparency, and knowing when to refer
The content of this workshop was used to train staff (including paraprofessionals) at the Duke University Medical Center Library, and is adapted for use in Second Life. If there is sufficient interest we will plan a second class for more advanced skills.

Friday, August 22, 2008

Updated study finds 56% of Americans seek health information - up from 38%

A tremendous jump in health information seeking between 2001 and 2007 is reported in a new report by the Study for Seeking Health System Change. Full content of the study's findings is available online. Looking at the graph above, I find it interesting that overall, people are reporting they use media sources, peers, and the internet at about the same rate to learn more about health issues - a very significant change in the way we look for health information.
The most striking finding on the impact of health information is that four of five information seekers found information that helped them to better understand how to treat an illness or condition. This positive impact on consumers’ health knowledge was consistently high across demographic subgroups (HSC Tracking Report No. 20).
The authors conclude that increased health information seeking by consumers may be a result of the awareness that physicians have less time, and call for health policy organizations to find ways to make good health information easier to find.

I disagree somewhat with the recommendation: There is fantastic information available now. To begin with, serves as a huge portal source to many, many other top-quality health association sites. Where I find gaps is in the consumer awareness of resources, and perhaps in the complexity of the resources. I have seldom encountered a consumer who is familiar with MedlinePlus, and when I introduce it, they are usually astounded and impressed (and perhaps, a bit intimidated) by the sheer volume of information. If I were Health Information Czar :) I'd launch a major publicity campaign on behalf of MedlinePlus, with TV and radio spots, with personal narratives, individual accounts of how people found information through that site that empowered them as partners in their own healthcare. Got Healthinfo?

Thursday, August 21, 2008

Wordle Image of This Blog healthInfoIsland in Second Life

Click the Small Image to see the real thing at!

Wednesday, August 13, 2008

Looking for Health : a workshop on finding good health information

Class is in session!
This great image, kind courtesy of Ewa Dobrogowska
thanks so much!

I'm pleased with the number of people who showed up to this first class on the brand new Virtual Ability Island! Today was also the first time I have tried using voice AND a serial chat feeder AND slides, along with typed chat, for teaching. Let me just say that it's clear to me that I am no teenager, multitasking with ease and grace.

One idea that has resulted from this class is that we need to have a group (oh no, another group!) for Healthinfo Island and Virtual Ability Island classes, workshops and events. I'm trying to find a script that I can insert into a poster ('touch here to be notified about classes') or other object.

Upon request, I am also linking here to the class transcript. Note that because I didn't get permission, I have 'anonymized' everyone except me, calling all class participants 'A'. As I did this, I thought it was probably a good practice even if people do give permission.

Tuesday, August 12, 2008

Second Life and Pubic Health

See the amazing use of virtual worlds for Public Health Simulations in Second Life .... To see the highquality video click here:
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Sunday, August 10, 2008

ALERT: AIDS occurrence far higher than supposed

Referring to the situation as a 'wake up call,' the CDC expresses a need for action and improved or expanded education and support. See the blog post for more information - and then increase your awareness by looking at displays created on Healthinfo Island by two AIDS and HIV support groups who share our space.

For 'real world' information please visit the site, and also For questions and health information support free of charge, contact Carolina Keats, medical and consumer health librarian, in Second Life.

Saturday, August 09, 2008


Please help us spread the word

Join us on Saturday, August 16th at 1 PM SLT to celebrate the Grand Opening of Virtual Ability Island.

The island was developed with a new resident orientation center, advanced tutorials, and training facilities for individuals with disabilities or chronic health conditions.

The entire island is accessibility-friendly for new and experienced residents and will provide ongoing classes for people who want to search for and evaluate health information.

Funding came through an initial grant from the National Library of Medicine to the Alliance Library System and is sustained by the generosity of individual contributors to Virtual Ability, Inc. We are excited to present this important resource to members of the Second Life community!

Location: Virtual Ability Island

Contact Carolina Keats or Eme Capalini, inworld, for more information.

Friday, July 25, 2008

Stroke Awareness Exhibit Now at Healthinfo Island

A project of the Occupational Therapy Center at Jefferson in Second Life, the Stroke Awareness Exhibit can now be seen on Healthinfo Island,

The interactive display was developed by graduate students in the Department of Occupational Therapy at Jefferson College of Health Professions in Philadelphia, PA, USA, under the direction of Zsuzsa Tomsen (Susan Toth-Cohen in RL). The exhibit consists of 3 presentations about stroke--including types of stroke, statistics, and rehabilitation. There is a 2-question quiz after each presentation. Visitors also can collect free brain-themed prizes - t-shirts, a necklace, and a hat.

When the Jefferson Faculty-Student team first discussed having an exhibit for Stroke Awareness Month (May 2008), the original idea was to have displays of topics related to stroke, video, and quizzes. "However," says Zsuzsa, "when the occupational therapy graduate students and I brainstormed (!), they suggested that we have a walk-through artery. Further, the students suggested the idea of 'clot dissolving quizzes--' made so that the visitor could pass through only if (s)he got the quiz questions right."

"This was a big turning point for our exhibit planning. A later trip to the Tech Museum of Innovation also provided some good ideas for how to better utilize the 3D world for healthcare related exhibits."

The Occupational Therapy Center blog can be found at: for more information about their exhibits and the process of their creation.

Sunday, July 20, 2008

Progressive values at work: Using virtual worlds for real world impact

How do Second Life activities affect 'real life' organizations and individuals? Join us for a discussion about the virtual health community and its role in empowerment and change. The panel will be in voice, broadcast live and archived on BlogTalk Radio, and is part of a 4-day event sponsored by Netroots Nation (formerly Daily Kos). We're setting aside the last half hour for Q & A.

Moderator: Widget Whiteberrry
Panelists: Gentle Heron, Virtual Ability, Carolina Keats, Healthinfo Island, and Roberto Salubrius, Ability Commons
Date: Sunday, July 20, 2008
Time: 10:15am-12:30pm (Pacific time):
Place: Netroots Arena

For more information about this event, see

All speakers can be contacted in Second Life. A link to the audio archive of this presentation will be provided as soon as it's available, as well as other information.

Sunday, July 13, 2008

Netroots Nation in SL - Healthinfo Island is there!

Netroots Nation (formerly the YearlyKos Convention) helps politically active netroots communities make a difference in the public sphere. The third annual gathering will be held July 17–20 in Austin, Texas. Netroots Nation 2008 will include panels led by national and international experts, including a virtual session held in conjunction with the 2008 BlogHer Conference; identity, issue and regional caucuses; prominent political, issue and policy-oriented speakers; a progressive film screening series; and the most concentrated gathering of progressive bloggers to date.
- from the blog announcement, found here.

I am honored to be speaking on a panel with Gentle Heron, of the Virtual Ability group, about the real life effects of health related activities in Second Life. Our part will be on Sunday, July 20th:

SL Panel "Progressive Values at Work: Using Virtual Worlds for Real World Impact"
Gentle Heron, Vitual Ability, Carolina Keats, Consumer Health Librarian
Time:10:15am-12:30pm (Pacific time):
Place: Netroots Arena

The panel will be in voice, simulcast to the Austin conference location, and may be archived - that part I don't know. What I do know is that it's a wonderful opportunity to talk about how those with disabilities and chronic health conditions can find community in a world none of us could have imagined.

Wednesday, July 09, 2008

Poor communication = Poor healthcare?

A study published in the June 2008 issue of the Canadian Medical Association Journal, asks whether poor communication was an important risk factor in adverse events for hospital patients (1).

In order to try to answer this question, the researchers randomly chose 2,355 patient charts from 20 hospitals across the province of Quebec, Canada, looking at reported communication problems (language, hearing abilities, and more) and then comparing these to the 'adverse events' reported.

Adverse events, in medical lingo, are 'unintended injur[ies] or complication[s] caused by delivery of clinical care rather than by the patient’s condition.' (1)

It may not come as a surprise to you that some patients with communication barriers were 3 times more likely to experience preventable adverse effects during their hospital stays. The two main contributors to the likelihood of adverse effects were found to be communication barriers and poor clinical management.

As an editorial in the same issue puts it, 'elderly women, those who were admitted to hospital because of an emergency and those whose ability to communicate with health care providers was limited because of a foreign language, deafness or a psychiatric disorder were the patients most likely to receive inadequate care.(2)'

The authors have called for more research looking at what can be done to identify people with communication problems, and then to consider these barriers in providing health care.

Solutions to the problem of health communication are both simple and complex. In the editorial mentioned earlier, the use of 3 questions is referred to as a way for health professionals to be sure that understanding is achieved:

What is my main problem?
What do I need to do?
Why is it important for me to do this?

These questions are suggested by the Partnership for Clear Health Communication, based on work done by Iowa Health ( The idea here is that patients should be able to answer the three questions after talking with their health providers to ensure that understanding has been achieved.

Other problems are more complex, says Frankel (2): health care is often based on providing the most efficient care for a very large population, and this may be a barrier to recognizing communication problems and helping those who are impaired in some way.

1. Bartlett, G., Blais, R., Tamblyn, R., et al. (2008, June 3). Impact of patient communication problems on the risk of preventable adverse events in acute care settings. CMAJ 2008 178: 1555-1562.
You can read it for yourself at (PDF).

2. Frankel, A. (2008, June 3). Health literacy and harm: Who is at risk? What is the fix? CMAJ 2008 178: 1573-1574. You can read it for yourself at

Summary and comments not otherwise cited are the opinion of Carol Perryman.

Tuesday, July 01, 2008

Exciting News!! - Annenberg Competition Results

I am so pleased to announce that the proposal crafted by partners in the Health Support Coalition has been among the top finalists, and will be funded to do what we had so long dreamed. We'll be building a new sim - Ability Commons, and calling it home for around 40 small and start-up health support groups who would not otherwise be funded in Second Life.

I have had such a good feeling about this all along, ever since Gentle Heron told me about the competition. And now, I find I am imagining what it will be, thinking many thoughts about what needs to happen, wondering how this new space will look (vision: village. home. )

Thinking - what is that, to have a space in a virtual environment, when I've heard so many people say things like - well hey, you can always teleport! Here in SL, you don't need to be right by something! Give up those tired old connections, your slavish reliance upon earthbound constraints - explore the possibilities!

And yet, we do need that proximity. I talk with you, move closer. We find joy in even the approximation of beauty, the sometimes comic-bookish representation of things and places that are meaningful. We bring them with us, make our environment what we cannot. In response to a question the other day - "why would SL be superior to the opportunity to ask questions (via IM chat on a website, for example) of experts?" I said - because we give it a human face. Our avatars and spaces extend our reach.

On the web and in SL, I know that our tendency is to find community. It is too simplistic, by far, to say that our electronic connections are replacements for what we don't have in person, within our own spaces. There is sometimes a connotation of shame in this, sort of like that trite saying about 'those who cannot do, teach.' To this I respond: how can community be a wrong, when it provides the means to help one another through life? How can it possibly be shameful, when it gives voice and connections, allows us to brush aside many boundaries of our physical manifestations? How can it replace what never can be brushed aside, those limits of our physical selves? - this electronic self is us - taller, better dressed, with wild hair and incredible wardrobes; flying, dancing - ourselves, as we choose to be for a time. It is us, reaching out in new ways, learning what this new space can add to our own humanity.

Ability Commons. You will be hearing more.

Sunday, June 22, 2008

Ability Commons proposal - Deadline for voting June 30!

As many already know, the Annenberg School is holding a competition for projects that promote the "common good" in real life and Second Life. The Health Support Coalition has submitted a proposal and is now a semifinalist. In a very exciting turn of events, the top 3 out of the 5 semifinalists will get funding to support their plans - but we need your support now! Please go to and learn more (including our proposal) and then VOTE for us! Please note that the deadline for voting is June 30.

Q: Why do we believe that Ability Commons deserves your support?

A: We believe in the power of peer support, and that those with disabilities and chronic diseases need and deserve a voice in this virtual world. With a vote for the Ability Commons project you are voicing your support for this community.

Q: What will funding pay for?

A: The Annenberg funding will pay for a new island, and for its setup. It will also pay for buildings so that each of the 40 support groups will have a space to meet, host events, and provide information. The Health Support Coalition intends to use 'off the shelf' buildings as much as possible in order to ensure that funds can be used where they are most needed - to support the community. However, we have no intention of compromising on the quality of support we give this amazing, growing community.

Q: What will funding not pay for?

A: None of the funding will be paid out to members of the Health Coalition for time we put into planning or administration. Time spent on this project is donated in full, with the possible exception of land and building design.

Q: What is this 'Health Support Coalition,' anyway?

A: The Health Support Coalition is a community of health support group leaders (more than 40 at present) begun by The Sojourner (sadly missed, every day), Gentle Heron (of Virtual Ability, Inc.) and Carolina Keats (coordinator for Healthinfo Island) in order to support health groups inworld. We created the Coalition to mentor new groups into being, extend our reach much farther as a combined group than we can do as individual groups, and to encourage collaboration for events. Just seeing a list of health support groups doesn't begin to convey the commitment, experience, caring, and knowledge that we know each support group leader brings to their efforts inworld.

Q: We already support health groups - how is this different?

A: For many groups, real life funding ensures that members find both real-life information resources and often, a space for meetings, displays, and events. But for so many others (perhaps half of inworld groups, though it's hard to know exact numbers here), the grassroots, global nature of the health community means that there is no funding unless it comes from members' pockets. SL participants who have disabilities or health conditions have a hard time finding each other, but when they do, the potential benefits of peer support are tremendous. Setting up a space like Ability Commons where collaboration can happen can multiply the benefits and amplify awareness for all SL participants about health conditions.

Q: Why is this proposal a good bet?

A: Those of us proposing this project collectively have demonstrated our commitment over several years wit activities and projects including, but not at all limited to:
  • Healthinfo Island, which exists to support the entire SL community's health questions with valid and current information;
  • The Accessibility Center build, which boosts awareness of disabilities and tools for accessibility;
  • The Dreams community, which has a strong and extensive program of activities for stroke survivors, those who are autistic, and more (much, much more!);
  • Virtual Ability, Inc., supporting the entrance into SL of those with disabilities, and partner with the Alliance Library System in the new Island, Virtual Ability;
  • Virtual Ability Island, which is now taking shape next to Healthinfo Island, our third grant-funded project, intended to provide orientation and training to new residents with disabilities and chronic diseases;
  • Outreach to support groups with information about activities and informational support available;
  • Events, such as the panel discussion on accessibility design in virtual environments, Namav Abramov's talk on grassroots activism for those with disabilities, and the World AIDS Day observation;
  • Support of groups like the AIDS and HIV groups who now have a home on Healthinfo Island;
  • Classes and educational displays on breast cancer, health literacy, AIDS/HIV and sexual health, diabetes, and much more.
Q: What happens after the 3-month grant period?

A: Actually, what happens during that period is more important, because from the start we'll need to actively seek other funding to sustain Ability Commons. Annenberg's objective is to help begin new initiatives, which must then be strengthened with funding from other sources. With a solid record demonstrating our abilities and inworld connections, we're a good bet for granting agencies, and believe our objectives constitute a substantial contribution to the common good.

If you agree, please VOTE now for this worthwhile project.

Carolina Keats
Coordinator, Healthinfo Island
Second Life

Friday, May 09, 2008

Final Project Report for HealthInfo Island Project in Second Life Now Available!

A final project report from the Alliance Library System marks the latest chapter in an exciting experiment funded by the Greater Midwest Region of the National Library of Medicine (GMR/NNLM).

The project, entitled “Providing Consumer Health Outreach and Library Programs to Virtual World Residents in Second Life” provided outreach to virtual medical communities, health training and information for residents of Second Life, links to consumer health resources, one-on-one support to residents, and part-time staffing for HealthInfo Island.

Carol Perryman, a doctoral student at the University of North Carolina at Chapel Hill and an experienced medical and consumer health librarian, coordinated the project. She stated, ” Participation in such an environment challenges the creative imagination. What is a library collection in a place where proprietary resources are out of the question? We feel collaboration is part of the answer.”

“We are thrilled to have been part of this exciting and ground-breaking new project and providing quality health information to residents of Second Life,” said Kitty Pope, Executive Director of the Alliance Library System. “Virtual worlds hold great promise for people with chronic health conditions and for people seeking information on health.”

Working with Perryman on the project was Guus van den Brekel, Coordinator of Electronic Services, Central Medical Library, University Medical Center, Groningen. Tom Peters, CEO of TAP Information Services, evaluated the project and authored the final report.

On HealthInfo Island, the first version of World AIDS day was observed, along with a class on finding quality AIDS and HIV information, a series of presentations by health educators and support group leaders whose “real life” locations were all over the world. A “Path of Support” created by a member of the disability community called the Heron Sanctuary, displays some of the more than 70 health support groups active in Second Life. Other events included a panel discussion about design for accessibility, a presentation about grassroots activism for disability activitists, and a casual question-and –answer session with a diabetes support group and an internal medicine physician in Greece.

For more information, please contact Carol Perryman at

The report is available here.

Saturday, April 12, 2008

Coming Soon to this location : Virtualability Island

-new resident orientation -training facilities - and consumer health information for people with disabilities and chronic illness Sponsored by Virtual Ability, Inc. and Alliance Library System Made possible by a grant from teh National Librar y of Medicine
posted by Namro Orman on Virtual Ability using a blogHUD : [permalink]

Friday, April 11, 2008

Search in Second Life Opens Up!

"Librarians Like to Search, Patrons like to Find"

The new build-in browser in SL opens up massive opportunities to search in web-based resources out there on the Web.

A simple example, but with huge potential, can be seen at the booth of the booth of the Dreams fair ( we now have a box that says: "type your search in chat with /5 "

HEALIA ("The high quality and personalized health search engine"

People can start searching right away, no need to click on something first.
Just say: /5 stroke (for instance)
It displays a blue box (load web page) and opens the build-in browser with the results.

But, that is not all! ;-)

The search is pushed via the web-search of the Healthinfo Island browser toolbar with pre-installed quality health search options (, still in beta, and constantly in a updating stage.

This results in a webpage INCLUDING a topframe displaying all other searchengines installed in the toolbar.
Patrons can repeat the search with the same query without typing again by clicking on the next search engine in that frame above.

The script that send this chat to the web-url was written by MB Chevalier, who also published a post on his blog about this.
I thank him for taking the time to talk with me about this, write the script and adjusting it to my wishes. ;-)
More on this later, little movie in preparation.

Wednesday, April 02, 2008

Food recalls

This image is from a terrific website on child nutrition programs.

Living in the US it's hard not to be aware of the whole Hallmark foods fiasco, where abuse was filmed and made public. It is also becoming more difficult to close your eyes and awareness to the reality: this was very likely only the tip of a giant iceberg, merely the most visible element of a serious problem here and elsewhere.
For example, here's a PDF document put out by the California Department of Public Health: Products made with Hallmark/Westland Recalled Beef.

Just how big a problem is this? What is a 'regular' person to do? There's some great information out there right now that can help you make better choices.

One of these is the US Food and Drug Administration (FDA) website, FDA Recalls, Market Withdrawals and Safety Alerts. In their own words, the site "includes the most significant product actions of the last 60 days, based on the extent of distribution and the degree of health risk." Here, you'll find how to report problems, the 'straight scoop' on media reporting, and the site provides links to older, archived information. Another link on this page leads to FDA Patient Safety News, where you can search the site for reliable and current information.

A 'gateway' site to federal food safety sites, the News & Food Safety Alerts page contains links to health warnings, regulatory compliance information, and more - including some interesting pages designed specifically for kids.

Finding reliable information on food safety and nutrition is not so difficult when you have access to sites like FirstGov for Consumers - check this out for lots of very accessible links.

Monday, March 31, 2008

Grey literature

Sounds mysterious, doesn't it, maybe veiled in ghostly whisps of... cobwebs or something, or as if it's a publication done after the ink ran out.

Actually, 'grey lit' is a term used to describe publications that are hard to locate. They are not often available through the 'usual suspects - databases and other searchable sites. Instead, these are the occasional reports, the self-published items. Grey lit covers a lot of ground, when you think about it. Neither fish nor fowl, grey lit is nonetheless worth knowing about, if only because there's a test (ok, no there's not). But I think after you glance through this all too brief list, you'll agree with me that these documents are worth knowing about.

Here's a sampling of resources from the latest Grey Literature Report (itself, a grey lit report! - don't you love it?)

From the AARP: Prescription drugs and Medicare Part D : a report on access, satisfaction, and cost

From Active Living Research, funded by the Robert Wood Johnson Foundation: Designing for active living among children - a document on childhood obesity

From the AHQR (Agency for Health Quality Research - National healthcare quality report 2007 - one of the United States' most important annual reports, this is one that's quoted pretty much everywhere.

Here's a really hot topic: Individual health insurance 2006-2007 : a comprehensive survey of premiums, availability, and benefits

Reducing poverty : what has worked, and what should come next This Canadian report finds areas for targeted intervention: "Six dossiers that require attention: education among the poor; Aboriginal poverty; the mentally ill and physically handicapped; the ghetto poor; high effective tax rates on the “near poor”; and in-work benefits such as earnings supplements."

Another very hot area: Whose data is it anyway? : expanding consumer control over personal health information

The school foods report card 2007
from the Center for Science in the Public Interest (CSPI)

Friday, March 28, 2008

'Naughty Auties'

Great CNN interview of David Saville (David Sparrow in SL), who began a support group called the Naughty Auties. I must say, I love that name!

Thursday, March 27, 2008

Italian Oncological Department

Dipartimento interato di Oncologica ed Ematologia Universita degli studi di Modena e Reggop Emilia
posted by Namro Orman on ISN Virtual Worlds using a blogHUD : [permalink]

Aids and HIV Center

Healthinfo Island, the sim devoted to support of consumer health information and supported by funding from the National Library of Medicine for two consumer-focused projects, is delighted to announce the addition of a new building for AIDS/HIV and Sexual Health information. The building will serve as a center for several AIDS/HIV support groups meeting in Second Life, as well as a display and education site for the general public. Located between the Path of Support and the Karolinska Institutet building, the new Center is a wonderful addition to the island.
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Thursday, March 20, 2008

Share the Health: Training People with Disabilities and Chronic Medical Conditions on how to Locate Quality Health Information

The Alliance Library System (ALS) is pleased to announce that the Greater Midwest Region/National Library of Medicine has awarded ALS a $35,000 grant to provide consumer health information to people with disabilities and chronic illness, in Second Life.

Partnering with ALS in the project will be Virtual Ability, Inc. (VAI). VAI presence in Second Life has included their ongoing work as The Heron Sanctuary, which provides a community of support for people with disabilities.

The grant, called Share the Health: Training People with Disabilities and Chronic Medical Conditions on how to Locate Quality Health Information, will fund a new island with an orientation and training center for people with disabilities and chronic illness. It is the third grant awarded to ALS for the provision of consumer health information in Second Life, and will also fund a continuation of current efforts.

For more information on this project, please contact Carol Perryman at, or in Second Life as Carolina Keats.
For more information on the Alliance Library System, please see or contact Lori Bell at
309-694-9200 ext. 2128, or in Second Life as Lorelei Junot.

For more information on the Greater Midwest Region/National Library of Medicine, please see

For more information on Virtual Ability, Inc., please see or contact Alice Krueger at or in Second Life as Gentle Heron.

Wednesday, March 19, 2008

CDC Health Information for International Travel 2008

Thanks to Resource Shelf, a great blog I've got feeding into my Google Reader, I learn about so many weird, wonderful things - this one's filed under part 2, as a useful source of information. The kind of thing that when you need it you really need it, and otherwise, you tend to forget it. The CDC Yellow Book for 2008 is an annually updated resource.

Things you'll find (picking almost at random, this resource is comprehensive:
Find health warnings by country, browse the table of contents, search for specific topics, check out the maps (what regions present the greatest risk of diarrhea? What vaccinations are required?) Find it here, bookmark it, use it when you need it - and bon voyage!

Healthinfo Island visited by members of the Metropolitan Detroit Medical Library Group

Namro and I will be giving a 'mixed reality' tour to a number of medical librarians today (mixed reality being in this case a combination of Skype and an inworld tour). We welcome such tours and offer them to other groups who might be interested in visiting us to learn about what we've got going on - and even (we hope) joining us in collaboration.

AIDS/HIV Center now on Healthinfo Island!

Healthinfo Island, the sim devoted to support of consumer health information and supported by funding from the National Library of Medicine for two consumer-focused projects, is delighted to announce the addition of a new building for AIDS/HIV and Sexual Health information. The building will serve as a center for several AIDS/HIV support groups meeting in Second Life, as well as a display and education site for the general public. Located between the Path of Support and the Karolinska Institutet building, the new Center is a wonderful addition to the island.

Friday, March 14, 2008

Use build-in web browser in Release Candidate Software Second Life

Here is a movie about how to use the Release Candidate Software Second Life
Be aware, that it is uncompressed, total length over 100MB, but it shows how to install and start this test version seperate to your normal version, and see what the changes are.
The movie shows how weblinks can open in the new build-in web browser, for example the link to some news of one of our rss-reader concering Consumer Health Information.
The movie is un-edited, more will follow about the new feature html on prim soon.
Read more about that

Sunday, March 09, 2008

HTML on a Prim : the next step!

I just copied a Bloghud post from Fleep to share this important news:

posted by Fleep Tuque
on Chilbo 20 hours, 27 minutes, 5 seconds ago


After downloading the latest Release Candidate, I logged in to see how this HTML on a Prim would work. Kind of convoluted to have it as a media type that you have to "play" and there's no live interactivity with links and whatnot, but hey! My webpage directly on a prim! With no snapshots! And from the clock in the upper right corner, it appears to be updating in real time! Omg! Yay!
Chilbo (171, 10, 94)


Friday, February 29, 2008

What's New in Consumer Health?

Le Lavement, Abraham Bosse. Interior scene in which an apothecary brings a clyster to a bedridden woman while a maid brings a chamber pot-chair. Image courtesy of the National Library of Medicine.

Debut: a casual, occasional summary of new sites, reports, and news pertinent to consumer health information. NOT limited to SL.
Purpose: interest & awareness

I keep seeing these things and wondering if they'd make a good display at Healthinfo Island. However, there's already so much there that another display - not sure it would be the best way to do this. So this is a trial balloon. Maybe I'll put an RSS feed on the Island, - but I'd prefer to have contributions from the community. Ideas?

Meanwhile, today I have 2 new things to mention. First is the Google Health 'teaser' complete with images written up on their blog. Competing with MSN to the starting gate, Google's trying to build a personal health portal that would let consumers upload their own health records, list meds, even request an appointment. Now in beta with the Cleveland Clinic, the concept promises much (debate, revenue potential, linking of personal health info to quality resources, legal and confidential concern). It's going to happen, but the development will be slow and massively publicized. Something to watch. Meanwhile, there are existing if more limited applications currently available (I cannot recommend any but here's a Wikipedia article, if you're interested), with what looks like a fair bibliography (how's that for cautious wording?) if you want to know more.

Second, a new report about 50 US top hospitals has been issued and is available on the web (note that it's PDF). Criteria for grading is provided, including infection rates. From the intro:
"Among the Medicare beneficiaries admitted to U.S. hospitals during 2004 - 2006, 171,424 lives may have been
saved if all hospitals performed at the level of Distinguished Hospitals for Clinical Excellence.
For the same time period, 9,671 patients may have avoided an inhospital major complication if they had
been treated at Distinguished Hospitals for Clinical Excellence.
HealthGrades America’s 50 Best Hospitals are those hospitals that have consistently ranked among the top five
percent in the nation for clinical quality. These elite organizations represent the best of the best and set the
quality standard for American hospitals."

Disclaimer: I have not completely read this report or the white paper on methodology.

Further disclaimer: Rating healthcare institutions based upon such things as infection and mortality rates may be questionable. How are regional and local differences considered? Are the patients treated generally sicker (or less sick) than the patients for other hospitals, and does that affect the ratings? I would take the claims with a judicious grain or two of salt. Turns out that the report does not include military hospitals, and uses data from Medicare patients only. Does this bring up further questions? At any rate, knowing about the criteria doesn't hurt. It's something that might empower you as a US healthcare consumer (and that's what consumer health librarianship is all about).

An even further disclaimer: Rating hospitals overall is sort of like rating a cleaning product intended for all surfaces. Usually you will be concerned with whether it leaves streaks on your windows - and some will be great for floors, but lousy for upholstery. Mortality, infection, and return rates per procedure (for instance) are probably more meaningful to the individual planning for surgery.

Thursday, February 28, 2008

Accessing Second Life: Universal Design in a Virtual World

Panelists: Atsuko Watanabe and Jondan Lundquist

I am posting this cleaned-up transcript on the blog, but will be happy to provide the complete chat transcript. Please contact me, Carol Perryman, at with your request. There is a lot of wonderful discussion that is not captured in the presentation text here.

Jondan's slides can be seen here.

Carolina Keats: Welcome to Healthinfo Island and to the Accessibility Center! I welcome you, and our speakers today, on the topic of universal design - Atsuko and JonDan.

If you haven't been here before, you're invited to browse the Center and tour the Island – in fact, we are happy to meet with you for a separate chat to talk about the various things going on here. And there's a LOT to say!
Healthinfo Island is a project funded by a grant from the National Library of Medicine, administered through the Alliance Library System (ALS) of Illinois.So is the Accessibility Center – it's also grant funded, also administered by ALS, specifically by Lori Bell, known inworld as Lorelei Junot, the spark behind all of the Info Islands, which now are populated by more than 700 librarians from all over the world, and which have expanded to include educators, researchers, and corporations.

Like the early Web, SL is a grand experiment: what will the future look like?
Can we do what we do now, in RL, in a virtual space? Can we do MORE? How can we harness the potential of this new world to enhance education, awareness, and community building, encouraging collaboration across all kinds of boundaries – geographic, profit-nonprofit, time, language, experience, skill, and other elements of our existence?
Lots of questions.

Here at Healthinfo, and at the Accessibility Center, we focus on health related issues. Healthinfo Island is about consumer health information – it's about empowering the consumer in their health-related decision making. It's also about supporting groups of individuals who come here to play but whose real lives often present very real needs for support…with chronic illness and emergencies, with disabilities, and with the sometimes alienating environment of medical institutions.

I am here as a medical and consumer health librarian to provide one-on-one information support to people, and to help promote awareness of what we call 'health information literacy. That's about critical evaluation of information found online and elsewhere, and also about finding information that is clear and accessible, so that there's no mystery about the side effects of medications, for example.

The Accessibility Center also has an objective of enhancing awareness. We're about helping people to know about assistive technology in RL and in SLl; about different kinds of disabilities, and providing a space for the support of inworld groups of people who are disabled. Working with this Center is my wonderful colleague Gentle Heron, host for today's event, and a number of other people. Her activities at the Heron Sanctuary, providing a community of support and helping people navigate the geography and skills needed in SL, are truly important to us here at Healthinfo Island. Making the Heron community a visible and vital part of the overall SL community IS important – it can help to change perceptions on the part of others about what a disability is, helping all to see how truly interrelated we are as humans in a world - virtual or real – with barriers to access that also bar the way to new ways of being.

I'll turn this over to Gentle now, but add my thanks to you, each, for being here with us.

Gentle Heron: Thank you Carol. Welcome to HealthInfo Island. It is my pleasure today to introduce our panelists. Atsuko, as you can see from both her appearance and her profile, is quite active in the disability community in Second Life. In RL she is an engineer who deals with accessibility issues, both in her profession and in her daily life as a wheelchair user. Jondan volunteers with Virtual Ability, Inc.'s "Heron Sanctuary" project. He does intake assessments for newcomers who are using assistive technology in SL, and helps mentors assist them in learning how to navigate through the ADLs (Activities of Daily Living) of Second Life.

This is a large and active audience. Our presenters will welcome questions and interaction. So let's give them our full attention, and learn from their experiences.
Welcome, Atsuko and Jondan.

Jondan Lundquist: we would like to ask one thing...that if you have a question, please IM one of us and we will call on you at the first opportunity....please don't shout out questions, we might miss them.

Today, we will explore the ways that accessibility and universal design principles can be applied to the Second Life experience. This virtual world has many inhabitants who have disabilities or impairments that challenge their experiences here. By being aware of these challenges and making adjustments in design of buildings, activities, and interface functions, the 'architects and builders' of Second Life can help ensure that as high a quality of experience is enjoyed by the most residents.

The Second Life experience is an exchange between the user, or resident, and the developers, builders, scripters, and others involved in making the 'world' what it is. There are several considerations on both sides of the equations that effect how the world is built and how the users experience the world, especially those users with disabilities.

On the user's side, there is, first and foremost, their perception of their own disability and how they wish it to be represented or not represented in Second Life. There are those who present themselves as they are in their First Life, with their avatars using mobility devices or other representations. There are those that appear 'able-bodied' in Second Life, yet make it known to others that they have a disability and ask for some accommodation, usually in the realm of communication.

There are those that have significant disabilities in First Life who present themselves without disability in Second Life, yet must deal with interface issues as they navigate and communicate. Each of these options is perfectly acceptable. Similarly, the individual may perceive their Second Life experience in different ways. They may reveal their disability to a close friend or two, gaining assistance in certain areas of functioning. They may choose to be an 'activist' in Second Life, making their disability the focus of their experience. They may choose to seek assistance from one or more disability awareness groups within Second Life, but appearing and functioning in the rest of Second Life as not having a disability.

I'll let Atsuko comment now from her experiences in the built environment in Second Life....then we'll talk about some solutions

Atsuko Watanabe: Thanks. Please bear with me a bit, my cut and paste is not functioning so my poor spelling will be apparent. In the rreal world I've heard many excuses for lack of access. The most common is how much it costs. And while it rarely cost much , here in SL it doesn't cost anything at all. Yet SL in many ways is not more accessible - but rather it is much less accessible in the built environment, and worse when it comes to attitudes.

I wonder why this is so. I've often been challenged quite publicly as to why I chose to represent myself as disabled in SL. It is perfectly acceptable to have a flying rabbit, but an avatar in a wheelchair is not acceptable (nothing against flying rabbits). And as much as I have tried to make contact with groups, say, of hearing impaired folks, it is still not possible to get a sign language script. And visually impaired folks, especially those using video to audio adaptive software, are almost totally excluded from SL.

Why is this??? Why is the built world of SL not more accessible, but much less so than the RL? My only interpretation is that SL is more a mirror of the real attitudes of the inhabitants than the real world. Certainly it isn't the cost.

Maybe it is a reflection of the "medical model" – that people with disabilities are broken and that they need to be fixed, and in SL, no one should have a disability because it is "Wrong" somehow. I'm not broken, I am proud of who I am.

Jondan Lundquist: A primary consideration for both users and designers is the interface and how it can be or needs to be adapted for varying impairments. One of the most frustrating issues for a lot of users with fine motor impairments is the management of their inventory. The 'click-and-drag' skill is sometimes difficult, sometimes impossible for these individuals. There are alternate methods possible in the interface, but they are not easily apparent. Changing an entire outfit, piece by piece, can be tedious, but users, through some clever inventory management can switch outfits instantly. There are also many assistive devices available in First Life that can be used to replace the standard keyboard and mouse to do these things. Another key issue that needs to be considered is the visual environment and some sort of override system for those with sight impairments.

By considering the following principles of Universal Design when planning, designing, and building within the Second Life environment, the Second Life experience can be highly enhanced for a significant portion of the population, while not affecting the experience for others in a negative way.

PRINCIPLE ONE: Equitable Use: The design is useful and marketable to people with diverse abilities. Guidelines: 1a. Provide the same means of use for all users: identical whenever possible; equivalent when not. 1b. Avoid segregating or stigmatizing any users. 1c. Provisions for privacy, security, and safety should be equally available to all users. 1d. Make the design appealing to all users.

Atsuko: Notice this stage. It has the bright red edge. That is a form of universal design. It: doesn’t affect usability, but makes it much easier to see. It’s a matter of contrast.

Jondan: PRINCIPLE TWO: Flexibility in Use: The design accommodates a wide range of individual preferences and abilities. Guidelines: 2a. Provide choice in methods of use. 2b. Accommodate right- or left-handed access and use. 2c. Facilitate the user's accuracy and precision. 2d. Provide adaptability to the user's pace.

Accuracy and precision are big items for folks with fine motor impairments in SL.... you click a door to go through and then orient yourself to move....and the door shuts.

PRINCIPLE THREE: Simple and Intuitive Use: Use of the design is easy to understand, regardless of the user's experience, knowledge, language skills, or current concentration level. Guidelines: 3a. Eliminate unnecessary complexity. 3b. Be consistent with user expectations and intuition. 3c. Accommodate a wide range of literacy and language skills. 3d. Arrange information consistent with its importance. 3e. Provide effective prompting and feedback during and after task completion.

Now, putting all this into practice is the hard part.

PRINCIPLE FOUR: Perceptible Information: The design communicates necessary information effectively to the user, regardless of ambient conditions or the user's sensory abilities. Guidelines: 4a. Use different modes (pictorial, verbal, tactile) for redundant presentation of essential information. 4b. Provide adequate contrast between essential information and its surroundings. 4c. Maximize "legibility" of essential information. 4d. Differentiate elements in ways that can be described (i.e., make it easy to give instructions or directions). 4e. Provide compatibility with a variety of techniques or devices used by people with sensory limitations.

PRINCIPLE FIVE: Tolerance for Error: The design minimizes hazards and the adverse consequences of accidental or unintended actions. Guidelines: 5a. Arrange elements to minimize hazards and errors: most used elements, most accessible; hazardous elements eliminated, isolated, or shielded. 5b. Provide warnings of hazards and errors. 5c. Provide fail safe features. 5d. Discourage unconscious action in tasks that require vigilance.

PRINCIPLE SIX: Low Physical Effort: The design can be used efficiently and comfortably and with a minimum of fatigue. Guidelines: 6a. Allow user to maintain a neutral body position. 6b. Use reasonable operating forces. 6c. Minimize repetitive actions. 6d. Minimize sustained physical effort.

PRINCIPLE SEVEN: Size and Space for Approach and Use: Appropriate size and space is provided for approach, reach, manipulation, and use regardless of user's body size, posture, or mobility. Guidelines: 7a. Provide a clear line of sight to important elements for any seated or standing user. 7b. Make reach to all components comfortable for any seated or standing user. 7c. Accommodate variations in hand and grip size. 7d. Provide adequate space for the use of assistive devices or personal assistance.

And that goes back to attitude. It’s really not that difficult to do some of these things.

Saturday, February 23, 2008

Accessing Second Life: Universal Design in a Virtual World

The SL Accessibility Center, Healthinfo Island, and Virtual Ability, Inc. are proud to present a panel discussion on the topic of universal design. Please join us for this event, which will take place on February 28, 2008, at 9:00 a.m. SLT (Pacific time) on Healthinfo Island ( Contact Gentle Heron or Carolina Keats inworld for more information.

With 35 years in education and rehabilitation services, Jondan Lundquist often found himself devising home made accessibility solutions for his students. Returning to studies in biomechanical engineering and later, a doctorate in education, Lundquist now works as a consultant in assistive technology in the Western United States. Jondan's interest in Second Life is in accessibility solutions for residents who have disabilities or impairments, in order that they may have the best possible in-world experience. Whether in the appearance of a building, an interface adaptation, or addressing any other particular need or desire of a resident, he hopes to use his expertise to apply principles of Universal Design whenever possible.

Atsuko Watanabe spends her Second Life redesigning and rebuilding some of the structures on Simon Walsh's Second Ability sim. Watanabe is a degreed engineer who has worked on accessible transportation engineering projects for many years, including contributing roles for major regulation and design criteria documentation for subway, bus, and light rail systems, recreational, and prison system. Atsuko has been a manual wheelchair user for over 30 years. Watanabe will discuss her experiences with accessibility issues in SL, as well as how access and acceptance of people with disabilities in SL is a reflection of attitudes in RL.

Watch this blog for an event transcript as well as pictures!

Monday, February 18, 2008

Serbian Medical Libratian at Healthnfo Island

Serbian Medical Libratian at Healthnfo Island. The librarian of the National Cancer Research Center on a visit at HealthInfo Island
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Sunday, February 17, 2008

Grassroots Advocacy in Second Life: Namov Abramovic (Nick Dupree)

The slideshow is also available (at a far better rate of speed - sorry this is so fast!) here.

Last night, on the roof of the Accessibility Center, on Healthinfo Island, in Second Life, I was privileged to learn about the experiences of Namov Abramovic, a real life from-the-ground-up warrior for the rights of those with disabilities. I could tell you that his words are powerful (enough to fuel revolutions, enough to engender spirited discussion) but my words, describing his, cannot do nearly the job that his own words can do.

For that reason, we have captured his words so that others can read them, and comment. As soon as I figure out how to do it, I'll also post the slides.

Gentle Heron:
Hello everyone and welcome to the Accessibility Center on HealthInfo Island. Thank you all for coming. Tonight we are pleased to introduce Namav Abramovic, in real life Nick Dupree. In Second Life, Namav is a co-founder of the Open Gates Peer Support Network, which provides a 24/7 chat and private support channel to people with disabilities.
He is speaking tonight on "Possibilities in Grassroots Activism, a topic with which you will learn he is intimately involved.

Tonight Namav will talk about questions such as "how can you change Medicaid policy?" "what is grassroots activism?" and "what does it mean to include people with disabilities?" These topics of course are of interest to people with disabilities, which is why Namav's presentation is co-sponsored by Virtual Ability, Inc. But all of us have or will interact with the health care system at some time in our lives. So we all need to be aware of the pitfalls of the system, and of what we as individuals can do about them.

The transcript of Namav's presentation will be available as part of HealthInfo Island's blog at after today. You will be able to post your comments on the HII blog when it goes live. Therefore, we ask that you send your questions and comments this evening by IM to either Carolina Keats or Gentle Heron. We will send them to Namav to address at the end of his presentation. Again, if our latecomers would please type their names into the chat for the transcript. I think we will be ready to begin.

Namav Abramovic:
Welcome! Thank you so much for coming. I'm Nick Dupree, and tonight I'm discussing what is possible in grassroots activism. This presentation is essentially the same presentation I've given in person at disabilities conferences in Boston, Chicago, Minneapolis, DC, and Martin Luther King's church in Montgomery. I've always had muscular dystrophy, and had to be put on a respirator at age 13. I always have a photo of me when I do this presentation in real life. Why leave it in for SL? People need to know that ventilator-dependent people aren't that scary looking.

To keep me going, I need a lot of care. I received nursing care from Alabama Medicaid. But because there is no federal mandate to cover people once they turn 21, states are free to do whatever they want for adults' long-term care. And in the poorer, more conservative states, what they do is pay for as little as the letter of the law allows. So people turn 21, and fall off with nothing. I saw the writing on the wall, saw the suffering and death that results from this situation, and I had to fight so I (and my younger brother) could survive.
So I fought like hell. Fight or flight.

I started when I was 19 years old. How did I win?

I started off simply writing letters to public officials asking them to fix this. I got nowhere at first. I started a small web page to document the responses (and non-responses) of the people in government (while also juggling university classes).
The web page went from being only a few letters, to being a big campaign. I worked on it every day. I sent it all over the web. I raised enough noise in my city to attract the attention of the local media. In August 2001, the local NBC station cornered a local legislator and asked him on camera what he was going to do about it. He introduced legislation in the Alabama State Senate to extend the care past age 21. SB 113: the Nick Dupree Adult Care Act. I went to Montgomery to testify to the Alabama State Senate Health Committee (this made the front page of the Mobile Register, which is pictured here).

Alabama Medicaid testified against it. They said we can't afford it. I argued that human life is invaluable, and we can't afford not to. It passed that committee. And another. Then it was crushed on the Senate floor. Alabama Medicaid has a lobbyist working the halls in Montgomery. I don't.

This was a devastating loss. No other path seemed open to me. But I plugged on. What other choice did I have? The attention faded away awhile, but I kept relentlessly writing and emailing. I never let go. A local activist said "he is like a dog with a bone."

Between university and my campaign, I worked 20 hr days. I got hospitalized once because I got worn down and got pneumonia. But it's relentless tenacity that wins.
Eventually, I got enough media attention that our state Protection and Advocacy agency had to sue our behalf. In February 2003, we filed a lawsuit: Nicholas Dupree and Ruth Belasco (my mom) v. Mike Lewis, Medicaid Commissioner and Bob Riley, Governor.

It is all the pressure points at once that finally felled the beast. Alabama Medicaid caved (before the judge could rule against them) and allowed me and a few others ventilator-dependent people to continue home care after they turned 21.

I won, three days before I was slated to lose everything on my 21st birthday.

If you hammer that tree long enough, it will matter how deeply rooted the tree is, or how small your axe is (see Bob Marley's song "Small Axe.") This is true of any cause, whether it's peace, regulation, civil rights, anything.

This seminar is about giving you the tools we need to change the world.

"What is grassroots activism?" It is important to note what it IS and what it ISN'T.
It is about influencing public policy. I don't think that just sitting around exchanging ideas is activism---it is a precursor to activism. You have to go out and DO IT.

We also need to define what ARE disability issues. Certain people (like people with disabilities) get excluded offhand, because they are different, or it is hard to include them.
- segregation
- majority excluding the minority

Below are pics of US Supreme Court, and also me in Montgomery. This is a quote from the Brown v. Board ruling. This got a big *gasp* from the audience, always.
Contrast with OLMSTEAD - it shows the same root issue
Once we see disability issues as a root segregation issue, we can be much more effective advocates.
We ALL want to be included. it is an inseparable part of our humanness. To deny inclusion is to deny humanity
What is inclusion---real inclusion? People need real connection
real relationships
not "potemkin village" inclusion---institutions set up to look like fake towns, etc
by saying "real life" I am trying to say that there is no substitute for real relationships and supports
Self-determination means, I CHOOSE.
The basic human right of freedom
A freaking committee doesn’t choose my life, I choose
We can heal the world
Hard advocacy makes it possible

Related Links

Nick Dupree's Wikipedia page
NPR story about Nick
Wikipedia entry on the Disability Rights movement
Aldon Huffhines' excellent reflection on a startling mesh - Finding Obama’s Reality Check at a gathering of disabled people in Second Life