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 (http://slurl.com/secondlife/Dreams/120/26/25) 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 (http://healthinfoisland.ourtoolbar.com, 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 cp1757@gmail.com, or in Second Life as Carolina Keats.
For more information on the Alliance Library System, please see www.alliancelibrarysystem.com or contact Lori Bell at lbell@alliancelibrarysystem.com
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 http://nnlm.gov/gmr/.

For more information on Virtual Ability, Inc., please see www.VirtualAbility.org or contact Alice Krueger at akrueger@virtualability.org 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 1.19.1.1.
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

[26 views]

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)

[permalink]

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 cp1757@gmail.com 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 (http://slurl.com/secondlife/Healthinfo%20Island/59/72/26). 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 http://healthinfoisland.blogspot.com/ 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 topple....no 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
SEGREGATION
Once we see disability issues as a root segregation issue, we can be much more effective advocates.
INCLUSION
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 http://www.orient-lodge.com/node/2800

Monday, February 11, 2008

Chatlogs of Second Life Events

MB Chevalier mentioned the existence of a Chatlog facility to enter saved transcripts of Sl conversations.
This is really nice! I just added my chat transcript from my part at the Health Care Event. It took a few minutes to digest it, but this is the result.
http://sleeds.org/chatlog/?c=224
It is an amazing service called Chatlog, http://sleeds.org/chatlog/main.php
Currently there is no search option, but they offer :
  • recent Chatlogs
  • a browse option on tags and
  • on Participants of the chat discussions, which it pretty amazing.
The chats are visualized by colours, and when possible with little pictures. Urls are included.

Please note that you now can search on the tags/keywords I entered, AND you can select the names of people that took part in the discussion to see where they
contributed in other discusions!
Besides a search option I want to suggest:
  • some navigation improvements, back&forward
  • or direct links back to the home page from every page
  • add the rss -link I made ;-)

The site does not offer a RSS-feed right now, so I decides to make one by the use of a tool, a so-called " feedscraper" .Feed43
You can add it to your feedreader (Netvibes is my choice):
http://feeds.feedburner.com/RecentChatlogs
You can see it live at my Netvibes Ginger Universe http://www.netvibes.com/cmb#Second_Life_%26_Health



Sunday, February 10, 2008

Overview Health Care Event, Saturday, Feb. 9 Slang Life Library

Transcripts, Pictures, Music, Links, and more!
Please have a look at this compilation & overview of the great event! It maybe your first encounter with Netvibes, but THIS is what I LOVE. Soon everybody will be abled to make a website, a so-called Universe, for free.

Saturday, February 09, 2008

Heron Sanctuary & Virtual Ability


For many people with disabilities, Second Life is not a game. It provides a whole new world where they can be free of the limitations of their bodies.
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Pecos Kidd from Virtual Ability, Inc. who will be talking a...



Pecos Kidd from Virtual Ability, Inc. who will be talking about supporting people with disabilities. "Virtual Ability, Inc.s vision is: To be the leading provider of services for and information about the disabled in electronic virtual worlds. Our mission is to enable people with a wide range of disabilities to enter into electronic virtual worlds, and provide them with a supporting environment once there."
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Poppy Zabelin and Marissa Goodliffe are both volunteers for...


about the peer group activities in Second Life for cancer survivors and caregivers. " SL's Cancer Survivors Group was formed originally in 2006 to walk the Survivors Lap at Relay For Life, and has grown and evolved into a global peer support network. We now have around 150 members from all around the world - more than double the number in July last year."
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

SL Healthy by Perplexity Peccable



Perplexity Peccable: SLHealthy: A Community-Generated Wiki Index to Health in Second Life
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Yoghas Etchegaray, Internal Medicine specialist at AMMC and...



Yoghas Etchegaray, Internal Medicine specialist at AMMC and in real.
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Elspet Glasgow from AMMC



Elspet Glasgow from AMMC.: " We use various techniques, including animations, observations, lectures and scenarios. We’re working on equipment to allow the student to come into the center and interact on their own time and without supervision, such as with the Heart and Lung stools in our display."
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Elspet Glasgow and Vladimir Burdeyna from Ann Myers Medical...



Elspet Glasgow and Vladimir Burdeyna from Ann Myers Medical Center. AMMC trains RL med students, nursing students and psychology students here in Second Life.
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

SAnityInn Wind concert at Health Care Event


SanityInn Wind concert at Health Care Event. Great show and audience!
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Amaya Summers on suicide prevention



Amaya Summers on suicide prevention at Health Care Event
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Simon Walsh- Wheelies at the Health Care Event Today

Simon Walsh- Wheelies. Owner of Second Ability (the disability sim), Wheelies Nightclub and Stevens Centre. I am a disabled people with cerebral palsy and a SL wheelchair user with ambition! See www.simonstevens.com or www.wheeliesclub.com for more information
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Avalon Birke about the Wellness Island - Mental Health Res...


At the Health Care Event at the Slang Life: Avalon Birke about the Wellness Island - Mental Health Resources in Second Life.
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

MB Chevalier at Health Care Event at SlangLife Library


He is the Sexual Health SIM project lead, based at the University of Plymouth in Devon, UK. collaborators and sponsors: Loudli Singh (also from University of Plymouth like me) and Zsuzsa Tomsen from Thomas Jefferson Univ, USA, and our Sponsors, Education UK http://www.sleducationuk.net/
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

SLang Life LIbrary; Health Event



Ricken Flow at the Health Care Event today at Slang Life Library, an all day event. Come and engage in discussion and interesting presenters about Health subjects
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Tools & Accessibility for Second Life

Taken from to Sl website RESIDENTS RESOURCES

I am always looking for tools that can help residents to communicate, navigate or publish.

Accesibility & Interface
Mapping for Voice Buddy
A .zip file with Second Life mappings to Voice Buddy, a voice recognition package that works with Second Life

KitCom - the revolutionary communicator
KitCom is a free World Wide Web to Second life chat application. The first tool enabling realtime text communication between a website and your avatar. Your chat partner needs no registration or login at Second Life. English and German Version available.

zonkster.com
zonkster is a web based service that lets you send IMs to residents in-world from any PC.

Subscribe-O-Matic
Alternative to in-world group notices - it lets you send messages and items to thousands of people that can easily subscribe to your list simply by touching an in-world kiosk - no need to join any groups or put up with group spam and random chatter. Also perfect for mass distributing magazines, etc.

Favourites, tagging & blogging

Bloghud
The 'blogHUD' is a tool to let you blog from Second Life and crosspost your text posts or image postcards to your own blog or photo-sharing account.

Sloog.org
Sloog is a HUD for SL residents. It helps you save and share your favorite places and friends by "tagging" them (attaching keywords that describe them ). You can search for your saved info later on, both in-world using the same HUD or off-world in the website. Sloog is free to use.

sl2go
Description and pictures of interesting places in SecondLife, sorted by cartegories. A moueseclick at the picture will bring you directly to the location selected.

SLEK - SL Easy Keys
Are you bored repeatedly typing out commands or the same chat messages in SL? Getting tired typing AO ON, AO OFF? Want to setup your own hot key to a SL function? Then save time by using SLEK. SLEK is the answer to your typing problems. :-)

Literature Alive!
LA! provides open content tools and free training to residents in SL on creating ethical and immersive educational and training materials. Private sessions are available for education and business.

Free To Use Spaces
Public spaces to use for events free of chrage!
Want to host a class, party or other event in SL, but not ready for the time, expense and hassle of owning land? You can use K-Palace, K-Park and other K-Foundry sponsored spaces for non-commercial events anytime you like! Free of charge, no reservations required.

This is a NOT COMPLETE overview. Have a look at the External Services page of the SL WIKI.
Here is a selection:

Friday, February 08, 2008

Health Care Event, Saturday, Feb. 9 Slang Life Library


A variety of interesting presentations and a concert by Sanity Inn are offered this Saturday by SL'ang Life magazine.
Learn more about the extensive health care offerings in SL.
The event runs from 9 am - 5:30 pm SLT.

Presenters include: * Kat Klata- Multiple Sclerosis Help and Support
* Simon Walsh- Wheelies
* ChaCha Biedermann- AIDS and HIV Support
*MB Chevalier- Sexual Health sim
* Avalon Birke- Wellness Island
*Amaya Summer- suicide prevention
* Elspet Glasgow and Vladimir Burdeyna- Ann Myers Medical Center
* Namro Orman- health blogging in SL
*Perplexity Peccable and Skaidrite Norse- SLHealthy website
*Pecos Kidd and Gentle Heron- Virtual Ability, Inc.
* Carolina Keats- Consumer Health
posted by Namro Orman on SlangLife using a blogHUD : [permalink]

Health Care Event, Saturday, Feb. 9

Health Care Event
Saturday, Feb. 9
Slang Life Library􀀁

A variety of interesting presentations and a concert by Sanity Inn are offered this Saturday by SL'ang Life magazine. Learn more about the extensive health care offerings in SL. The event runs from 9 am - 5:30 pm SLT.

Presenters include:
* Kat Klata- Multiple Sclerosis Help and Support
* Simon Walsh- Wheelies
* ChaCha Biedermann- AIDS and HIV Support
*MB Chevalier- Sexual Health sim
* Avalon Birke- Wellness Island
*Amaya Summer- suicide prevention
* Elspet Glasgow and Vladimir Burdeyna- Ann Myers Medical Center
* Namro Orman- health blogging in SL
*Perplexity Peccable and Skaidrite Norse- SLHealthy website
*Pecos Kidd and Gentle Heron- Virtual Ability, Inc.
* Carolina Keats- Consumer Health Library
* Gentle Heron and Carolina Keats- HealthInfo Island
* Namav Abramovic- health care activism

Sanity Inn will be in concert from 1-2 pm SLT

Posters explaining the work of various health and disability support groups will be on display throughout the day.

Please join us for an event that showcases only a small portion of the activities and groups which are active in Second Life.

IM Uzi Boa for more details.􀀀
Saturday, Feb. 9, 9 am - 5:30 pm SLT


© All rights reserved.

-----------------------------------------------
SL'ang Life magazine is a real life periodical delivered to your home monthly. It contains the latest news, information about the most important events in Second Life, interviews with personalities of the month, articles on fashion and travel. You will read opinions on Second Life expressed by people who are not involved with the Platform, as well as interactive stories, whose plot will be modified by the readers.

Sunday, December 16, 2007

HealthInfo Island locations

Healthinfo Island Locations

Carolina Keats or Namro Orman are delighted to meet with individuals or groups for tours. We don’t have a ‘regularly scheduled tour’ time so we are happy to book a time at everyone’s convenience.

1) Center pavilion
2) Path of Support
3) Accessibility Center
4) Alzheimer’s Disease Display
5) Consumer Health Library
6) Mountain gardens
7) Classroom
8) Medical Library
9) National Library of Medicine, Special Information Services
10) Karolinska Institute, Stockholm
11) HIV/AIDS Information
12) Nursing Instructional Videos, Ivy Tech

Saturday, December 15, 2007

Multi RSS readers from QA Computing



The reader has a capacity for 5 feeds Select the feed by clicking on the feed arrows to the left. Next and prev buttons scroll through news items, click on View for a URL to the full news story on the web. Why not drop by and have a look!
posted by Namro Orman on QA Business Park using a blogHUD : [permalink]

Monday, December 03, 2007

ALl About: WORLD AIDS DAY 207 AT HEALTHINFO ISLAND




We will gather all information about this event the best we can.
Please expect a load of links to:

Friday, November 30, 2007

Preview: Music and Dance at HealthInfo Island

November 30th, 2007 · No Comments · Edit


On healthInfo Island in Second Life an event is taking place on December 1st, WORLD AIDS DAY 2007 in SL.
This is a short movie of the SIS/NLM site on HealthInfo Island with a nice combination of healthinformation and Dance. You see Namro Orman in sync with his colleague Alida ;-)

There is also serious stuff.

  • Workshop 09.00 AM SL
    “Looking for Health: Finding Quality HIV/AIDS Information” by Carolina Keats

  • Presentations & Discussion 12.00 NOON SL
    • ChaCha Biedermann, will talk about Support group for the AIDS&HIV HELP group and the Psychosis and Depression Group
    • Ricken Flow, originator of the Nyumba Rafiki Community Center (NRCC), meaning house of friends, will talk about his Community Center
    • MB Chevalier will talk about his work, the Sexual Health Sim of the University of Plymouth, UK, and the HealthCyberMap.

Thursday, November 29, 2007

HIV/AIDS rss feeds on HealthInfo Island


World AIDS Day 2007 in Second Life at HealthInfo Island : RSs feeds on HIV/AIDS news from Google Health and Pubmed
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

WORLD AIDS DAY 207 AT HEALTHINFO ISLAND


Please join us at HealthInfo Island for World AIDS Day 2007 on December 1st! Workshop 09.00 AM SL "Looking for Health: Finding Quality HIV/AIDS Information" by Carolina Keats Tours starting at 10.00 AM SL- and throughout the day.. Please contact us if you want a tourwith a special group. Music by DJ 11.00 AM SL Presentations
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Tuesday, November 27, 2007

Monday, November 26, 2007

Danish Aids foundation also busy on

December 1st, is the international AIDS day. A day to remember and honour those we have lost to this terrible decise. But also a day to to fight back, and try to stop HIV/AIDS in the world. In Denmark Copenhagen we will mark this day with lost of events, sales and partying. All in support for the AIDS foundation. The goal is to collect 50.000 L$ in one day, everything L$ will go to the AIDS foundation Come and help us stop aids ô€€…
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Floods hit HealthInfo Island or just an SL glitch?

Floods hit HealthInfo Island or just an SL glitch?
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Sunday, November 25, 2007

Workshop "Finding Quality Health HIV/AIDS Information

Workshop on searching for quality resources. December 1st on WORLD AIDS DAY, Starting 09.00 AM SL time at HEALTHINFO Island. Contact Carolina Keats or Namro Orman to know more!
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Saturday, November 24, 2007

WORLD AIDS DAY in SL on December 1st

Please join us at HealthInfo Island for World AIDS Day 2007 on December 1st! Be sure to drop by HealthInfo Island: *Special displays and newsfeeds on HIV/AIDS * AIDS Walk with information about HIV/AIDS Support Groups in SL *Podcasts on AIDS by the CDC in our Podcast Globe *Quality information resources, including search tools *Workshop on “Looking for Health: Finding Quality HIV/AIDS Information� by Carolina Keats *See what others are doing in SL on HIV/AIDS and Sexual Health *Guided tour around the Island http://infoisland.org/2007/11/23/world-aids-day-2007-at-healthinfo-island- december-1st/
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Thursday, November 22, 2007

POdcast AIDS CDC on healthInfo Island

For WORLD AIDS DAY 2007 HealthInfo Island is having an event with podcasts from CDC
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

WORLD AIDS DAY 2007 : Germany


AIDS Hilfe Bremen will have events on December 1st as well
posted by Namro Orman on Sebastian using a blogHUD : [permalink]

AIDES launched on December 1st


The French connection to World AIDS DAy 2007 is established
by a brand new AIDES center, opening on December 1st
posted by Namro Orman on area 51 using a blogHUD : [permalink]

Wednesday, November 21, 2007

NHS , the Next Stage, clinical Summit TODAY

The NHS Next Stage Review in Second Life The NHS Next Stage Review International Clinical Summit takes place today in real life in London. But remember, you can follow the meeting in Second Life or via the webcast.
posted by Namro Orman on National Health Service using a blogHUD : [permalink]

International Worlds AIDS DAy

1. december 2007 also on Denmark Copenhagen World AIDS Day, MEmorial PArk
posted by Namro Orman on DenmarkCopenhagen using a blogHUD : [permalink]

Thursday, September 27, 2007

The Path Of Support

Over 60 Support Groups have been found in Second Life. here you can walk along them
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

Sunday, September 02, 2007

Gentle Heron on Tour!

From the Heron Sanctuary I took Gentle to a tour today on HealthINfo Island
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]

iVinnie Accessibility Center



It has been funded by NLM, under cntract with UIC Universlty Library
posted by Namro Orman on Healthinfo Island using a blogHUD : [permalink]