August 3, 2012
|Documenting and Evaluating Impacts of Community Programs|
|Interpreting Disability Rights Across Cultures: A Study of International Reporting on the
United Nations Convention on the Rights of Persons with Disabilities
|Nola Nash||The Atlantis Community|
|Tom Boellstorff||A Discussion about Virtual Communities of Persons with Disabilities|
|Philip Rosedale||A Conversation about Virtual Communities|
|Kathryn Irving||Useful and Happy: Politics, Experts, and Special Education at the Massachusetts School for Idiotic Children|
|Preethy Samuel||Community Interaction of Families of Children with Developmental Disabilities|
|Caren Levine||Welcoming New Members into a Community of Practice|
August 4, 2012
|Carla Broek||Disability in Europe 2012: Is There One European Community?|
|The Various Approaches to Group Facilitation in Second Life®|
|Treacle Darlandes||A True Story|
|Richard Gilbert||Social-Emotional Outcomes of Second Life® for Individuals with Disabilities|
|Jamie Jordan||Entertainment: Motivational Comedy|
Announcement: Second Annual International Disability Rights Affirmation Conference
Virtual World Conference Affirms Rights to Community Participation
The second annual International Disability Rights Affirmation Conference will be held Friday August 3rd and Saturday August 4th 2012, in Second Life®. The theme of this year’s conference is “A Community of Communities.”
A person with a disability or chronic health condition is a member of multiple communities. Some communities are unique to the disabling condition. Other communities relate to personal interests, employment, socialization, religion, living arrangements, or geographic location.
Persons with disabilities can be fully functioning community members, given appropriate accommodations when needed. However, despite increasing legal protections ensuring community access and participation, significant barriers to equal access for persons with disabilities still exist.
The 2012 International Disability Rights Affirmation Conference will examine different perspectives about communities that are of interest to persons with disabilities. Presentations drawing from the history of the disability movement will provide background to an exploration of philosophical and technical considerations related to community formation.
- Chad Gobert from the National Service Inclusion Project and Melissa Rowan of the Job Accommodation Network will discuss how programs can document and evaluate their impacts in the community. (7:00 am Friday)
- Kimberly O’Haver, who oversees the Open Society Foundations’ work with youth with disabilities, will speak about international media coverage of the UN Convention on the Rights of Persons with Disabilities. (8:00 am Friday)
- Nola Nash, Project Manager of The Learning Center, will describe the Atlantis Community, the second-oldest Independent Living Center in the US. (9:30 am Friday)
- Tom Boellstorff, Professor of Anthropology at the University of California, Irvine, and author of Coming of Age in Second Life, will discuss how communities form in Second Life®. (11:00 am Friday)
- Philip Rosedale, founder and chairman of Linden Lab, creators of Second Life®, will chat with Alice Krueger, President of Virtual Ability, Inc. about how the virtual world infrastructure facilitates community development. (12:30 pm Friday)
- Kathryn Irving will discuss the history of the Massachusetts School for Idiotic Children, which is the oldest publicly-funded institution serving children with developmental disabilities. (2:00 pm Friday)
- Preethy Samuel, Assistant Professor of Occupational Therapy at Wayne State University, will speak about community interactions of families with a child with a developmental disability. (3:30 pm Friday)
- Caren Levine, a consultant in educational media and technology, will speak about welcoming new members into a community. (5:00 pm Friday)
- Carla Broek, a Belgian expert on online media accessibility, will speak about European disability issues under the European Union. (8:00 am Saturday)
- Cindy Tandy of Valdosta State University and Scott Anstadt of Florida Gulf Coast University will lead a panel discussion of varied approaches to facilitating communities within Second Life®. (9:30 am Saturday)
- Treacle Darlandes, co-owner of the “White Tiger Mentors” groups in Second Life®, will talk about learning to think about who is around us and about community inclusion. (11:00 am Saturday)
- Richard Gilbert, Professor of Psychology at Loyola Marymount University, will address the social-emotional effects of being in virtual communities on persons with disabilities. (12:30 pm Saturday)
- Jamie Jordan, the “funniest man on wheels” will wrap up the conference with his unique brand of Motivational Comedy (2:00 pm Saturday)
Alice Krueger, president of Virtual Ability, Inc., stated: “I am looking forward to learning more about the various communities people with disabilities are involved in. Being included in community affairs is a basic human right, too often denied to those of us with disabling conditions or chronic illnesses. Following up on last year’s IDRAC conference which focused on legal protections for these populations, this conference will highlight some of the ways people have used those protections to attain full community membership.”
Documenting and Evaluating Impacts of Community Programs - Chad Gobert, Melissa Rowan
Documenting and Evaluating Impacts of Community Programs – Chad Gobert, Melissa Rowan
IDRAC 2012 Presentation – 7:00 am PDT, August 3, 2012
Chad Gobert is an Online Training Specialist with the National Service Inclusion Project. He writes online curricula for webinars and asynchronous training, which includes working with integrating social media and virtual communities with traditional learning, and discussing how to make technology accessible.
The National Service Inclusion Project (NSIP) is a training and technical assistance provider on disability inclusion, funded by the Corporation for National and Community Service (CNCS), whose mission is to increase the participation of people with disabilities in national service. NSIP has an office in Second Life.
Lyssa Rowan is the New Media Assistant at the Job Accommodation Network (JAN). Her duties include maintaining JAN’s social networking presence on Facebook, MySpace, Twitter, and others, as well as building and maintaining JAN’s virtual office in Second Life. She helps make sure that JAN’s social networking and multimedia presentations are accessible, as well as doing research into general website accessibility.
The Job Accommodation Network (JAN), a free service of the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP), is the primary resource for technical assistance on job accommodations, employment legislation, and new technologies and accessibility.
Public and private entities are being forced in today’s climate to “quantify” their actions, and prove these actions are generating results. Our virtual community is represented by groups with this same interest. This discussion, co-presented by The National Service Inclusion Project (NSIP) and the Job Accommodation Network (JAN) will focus on not only providing some tools to quantify your actions within the community, but also demonstrating the results that come from these actions and partnering with other groups in the community to achieve success. Included in this presentation will be a review and provision of a continuous improvement cycle and logic model for you to fulfill your organization’s goals.
United Nations Convention on the Rights of Persons with Disabilities- Kimberly O’Haver
Interpreting Disability Rights Across Cultures: A Study of International Reporting on the United Nations Convention on the Rights of Persons with Disabilities – Kimberly O’Haver
IDRAC 2012 Presentation – 8:00 am PDT, August 3, 2012
Kimberly O’Haver is a Program Manager for the Youth Initiative at the Open Society Foundations. In addition to overseeing the Youth Initiative’s work in the former Soviet Union, she manages the program’s work with youth with disabilities. Her presentation is based on a paper written for a class on images of disability in the media taught by Beth Haller at the City University of New York in summer 2011.
The United Nations Convention on the Rights of Persons with Disabilities, adopted in 2006, is intended to “ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability” (Article 4). It promotes:
- “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
- Full and effective participation and inclusion in society;
- Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
- Equality of opportunity;
- Equality between men and women; [and]
- Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.” (Article 3)
Not all nations understand disability rights in the same way. O’Haver’s topic for her IDRAC presentation is “Interpreting Disability Rights Across Cultures: A study of international reporting on the United Nations Convention on the Rights of Persons with Disabilities.”
O’Haver explains, “Despite the good work of my employer and other like-minded funders, the bulk of the disability and UNCRPD work is led from a legal perspective around such articles as Article 12 (Equal Recognition Before the Law) or Article 33 (National Implementation and Monitoring). But I personally see some limits to focusing only on a pursuit of legal action at the local or international level, winning cases and then trying to implement changes later to legislation. I’ve seen from visiting our grantees that this approach doesn’t necessarily change public perception very quickly or necessarily at all. But media touches all of us in some way, and increasingly so in the developing world where social media is allowing youth to have more power in shaping their lives. So though legal approaches are very much needed, a multi-pronged approach might lead to more sustainable change. And supporting progressive representations of disability in media can be one of the prongs.”
The Atlantis Community- Nola Nash
The Atlantis Community – Nola Nash
IDRAC 2012 Presentation – 9:30 am PDT, August 3, 2012
Nola Nash is the Project Manager of The Learning Center at Atlantis Community, Inc., in Denver, CO. She has been involved with the disability community for almost 20 years, both as an activist and with the independent living center.
The Atlantis Community in Denver is the second-oldest Independent Living Center in the United States. Atlantis began in 1975 when the Reverend Wade Blank, a nondisabled nursing home recreational director, organized a handful of other staff and a group of young disabled adults to move people with disabilities out of institutions and into their communities. The concept was to create self-determined lifestyles, a revolutionary concept in the 1970s.
Nash will describe the Atlantis Community’s formation and sketch its history. She will talk also about ADAPT, the group that is famous for blocking busses in the 1980s to protest a lack of bus lifts.
A Discussion about Virtual Communities of Persons with Disabilities - Tom Boellstorff
A Discussion about Virtual Communities of Persons with Disabilities – Tom Boellstorff
IDRAC 2012 Presentation – 11:00 am PDT, August 3, 2012
Tom Boellstorff, Professor of Anthropology at the University of California, Irvine, is the author of several books, including Coming of Age in Second Life, and co-author ofEthnography and Virtual Worlds: A Handbook of Method, which is being released in August 2012. From 2007–2012, he was Editor-in-Chief of American Anthropologist, the flagship journal of the American Anthropological Association.
Boellstorff says, “My book Coming of Age in Second Life was a general overview, so by design I couldn’t go into detail about any particular community, but I did learn a lot from persons with disabilities in SL. For some of these folks, SL could be liberating, even life-transforming. I state in the book, for instance, how ‘Residents with short-term or newly acquired disabilities often claimed that Second Life could provide a venue for emotional support and information-sharing (for instance, about breast cancer). It could even help in the process of healing… Residents with more permanent physical disabilities also found new possibilities.’”
Boellstorff wants to encourage other researchers to explore communities in virtual worlds. “Virtual worlds are not everything happening on the Internet, not by a long shot. We have mobile phones, email, games, Facebook, and so many other things. But virtual worlds are an important part of this big picture, and we can learn a lot from people who spend time in virtual worlds. It’s been great in the last few years to have a growing research community, so it’s easier to compare different virtual worlds. And we are getting more interesting research about how virtual worlds and the physical world shape each other.”
“Because I originally did research in Indonesia, I have always learned a lot from applying the same ethnographic methods I have used in my work in Indonesia to examine virtual culture, as well as exploring how ethnographic methods must change for online contexts. In that regard, it’s great that this year’s conference theme is ‘A Community of Communities,’ because the idea of community is something that anthropologists have been talking about for 100 years. So in this talk, I will go over some basic points and then add a few thoughts about ‘virtual community’ and ‘disability community.’ Then we’ll have a general discussion which I think will be really interesting. What’s different about virtual community and disability community, and what’s similar? What happens to virtual community when you think about it from the perspective of people with disabilities, and what happens to disability community when you think about it from the perspective of virtual worlds?”
This was a fabulous presentation. I was inspired to work in Second Life (and on the topic of disability) because of his book Coming of Age in Second Life. One of the best things I think that came out of his discussion was the point that we have so much to learn from those that are disabled and disability communities-that we need to move past studying disability as a problem to be solved and instead as a topic to learn more about ourselves, others and how we think about things like identity, the body and participation. Bathsheba Darkfold/Katie Vizenor
This presentation offered me some significant new insights regarding the understanding of “community” and “culture” as applied to virtual worlds as well as of the emerging concept of “disability community.” I particularly appreciated Tom’s clear explanations and ability to respond well to audience questions and comments.
A Conversation about Virtual Communities - Philip Rosedale
A Conversation about Virtual Communities – Philip Rosedale
IDRAC 2012 Presentation – 12:30 pm PDT, August 3, 2012
Philip Rosedale (Second Life Avatar: Philip Linden) is the founder and chairman of Linden Lab, creators of Second Life.
In 1995, Philip Rosedale created an innovative Internet video conferencing product (called “FreeVue”), which was later acquired by RealNetworks where (in 1996) he went on to become Vice President and CTO. In 1999, Rosedale left RealNetworks, founded Linden Lab and built a virtual civilization called Second Life, fulfilling his lifelong dream of creating an open-ended, Internet-connected virtual world. Since leaving Second Life, Rosedale is working on several new experiments in distributed work and computing, including Coffee & Power and Worklist.net.
Rosedale will chat with Alice Krueger (Second Life Avatar: Gentle Heron), President of Virtual Ability, Inc, and founder of the Virtual Ability community in Second Life. They will explore the technical and other design decisions and limitations that have guided the formation and growth of communities within Second Life. They will also discuss how the infrastructure of the virtual world facilitates peer support communities now and look to what types of tools could be created to take such communities to the next level in the future.
The chat will be presented simultaneously in voice and text. There will be time at the end of the session for the audience to ask questions of Rosedale.
Update August 8, 2012: A video of the conversation with Philip Rosedale is posted to You Tube, thanks to Metaverse Broadcasting Company!
Interesting conversation and a great opportunity to be “in the same room” as the founder of SL. The thing that struck me was that he was (still is, pretty much) a systems-and-technology guy…. and the fact that Second Life has become a locus for so many communities was never part of his original vision (nor, I suspect, is it the strongest focus for SL now.) Rosedale responded well to multiple questions from the packed auditorium and experienced many of the same challenges (lag, more lag, audio problems, more lag, and more audio problems) as the general population. I had to chuckle- sometimes technology really is the great equalizer! An excellent presentation and kudos to Virtual Ability for inviting him!
Useful and Happy: Politics, Experts, and Special Education at the Massachusetts School for Idiotic Children - Kathryn Irving
Useful and Happy: Politics, Experts, and Special Education at the Massachusetts School for Idiotic Children – Kathryn Irving
IDRAC 2012 Presentation – 2:00 pm PDT, August 3, 2012
Kathryn Irving is a PhD student in the History of Medicine program at Yale University. Before coming to graduate school, she worked as a doctor in Melbourne, Australia; she has a particular interest in working with children with disabilities. Her talk is taken from her dissertation project, which uses a critical disability lens to explore schools for so-called “idiotic” children in the mid-19th-century United States.
The Massachusetts School for Idiotic Children was the first publicly-supported North American institution founded to educate people with what we now refer to as developmental disabilities. It still exists as the Walter E. Fernald Developmental Center in Waltham, Massachusetts.
Founded in 1848 during a period of optimism, it was a model of “modern” educational services for people with disabilities. Within a few decades, however, the institution was caught up in the Eugenics movement. Although now we would find both its original name and its methodologies offensive, this school is important in understanding the history of services for people with disabilities.
I can but praise Kathryn for how well she did. Providing her presentation from the steps of a public library, she must have had a lot of distraction.
If we would not have heard the sounds around Kathryn, we would hardly have known what distractions she had to cope with.
Community Interaction of Families of Children with Developmental Disabilities - Preethy Samuel
Community Interaction of Families of Children with Developmental Disabilities – Preethy Samuel
IDRAC 2012 Presentation – 3:30 pm PDT, August 3, 2012
Preethy S. Samuel is an Assistant Professor of Occupational Therapy in the Eugene Applebaum College of Pharmacy and Health Sciences at Wayne State University, Detroit, MI, and a faculty affiliate of the Developmental Disabilities Institute (Michigan’s University Center for Excellence in Developmental Disabilities). She is clinically and academically trained both as an Occupational Therapist and as a Sociologist.
As a researcher, Samuel’s primary interest is in refining the methods to measure the quality of life of the entire family unit, rather than just the person with the disability. She was recently elected to serve as a vice-chair of the Quality of Life- Special Interest Research Group of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). Her early interest and desire to work with families of children with developmental disabilities became a very personal challenge when her oldest son was diagnosed to have an autism spectrum disorder, seven years ago.
The family is usually the first community experienced by children with a disability. The family’s community usually includes medical professionals, friends, neighbors, and many others. The broader community offers role models, sources of information and inspiration, as well as providing a necessary support and safety net.
Samuel has studied the community interactions of families that include children with developmental disabilities, within the conceptual framework of family quality of life. She has focused on the different dimensions of community interactions of families, in particular four explanatory measures (Opportunities, Initiative, Importance, and Stability) and two outcomes (Attainment and Satisfaction).
Samuel says, “I am very interested in understanding how family members of children with disabilities interact with the people and places in their local communities. My interviews with about 149 families of children with various developmental disabilities show that most struggle to find meaningful opportunities for socially inclusive community interaction. I am very interested in learning how virtual communities such as Second Life can contribute to the quality of life of persons with disabilities and their families”.
Welcoming New Members into a Community of Practice - Caren Levine
Welcoming New Members into a Community of Practice – Caren Levine
IDRAC 2012 Presentation – 5:00 pm PDT, August 3, 2012
Caren Levine is a consultant specializing in educational media and technology at Etheoreal and is Director of the Learning Network at Darim Online. Her areas of interest include communities of practice, online learning, professional development, and the integration of social media for educational and non-profit organizations to assist them in doing their work in more connected ways.
Caren has completed course work toward her doctorate in educational technology at Teacher College, Columbia University, focusing on online professional development, and has taught graduate level courses online and face-to-face. She volunteers as a Reading Buddy at a local public school and enjoys hanging out at small airports. She is know as Claird Loon in Second Life and served as the Lead Docent at ISTE in SL.
Successful communities begin small, then grow and thrive. To do so, they must find ways to incorporate new members. Community growth is a process of mutual adaptation. Not only must the entering new member adapt and integrate, but the community will change during this growth process as well.
Levine comments, “How we welcome new members into our communities can be full of nuance and complexity. It is an opportunity to think about the moment when we felt a part of a particular community and to develop a way of facilitating this process. Of particular interest to me is how the integration of new members can reflect the community’s values and help tell its story.”
Disability in Europe 2012: Is There One European Community? - Carla Broek
Disability in Europe 2012: Is There One European Community? – Carla Broek
IDRAC 2012 Presentation - 8:00 am PDT, August 4, 2012
Carla Broek is a Belgian project manager and expert on Internet and other online media accessibility. She led the Virtual Ability team that evaluated accessibility of online course materials for the College Open Textbooks collaborative. She spoke at last year’s IDRAC2011 conference as part of a panel on International Disability Rights.
The European Disability Strategy was unveiled in 2011. The Lisbon Treaty provides a legal basis for main-streaming disability issues into other policies. It also gives a legal status to the European Union’s Charter of Fundamental Rights.
European Commission Vice-President Viviane Reding will present a proposal for a ‘European Accessibility Act’ before the end of 2012 as a key element of the European Disability Strategy. The European Commission is required to ensure that the needs of people with disabilities are taken into account during the development and implementation of all EU policies and legislation.
Broek will discuss the current situation related to disability issues that exist in Europe under the European Union. She states, “There is no ‘one’ European community. That’s the problem. Every country acts on its own.”
The Various Approaches to Group Facilitation in Second Life - Cindy Tandy, Scott Anstadt
The Various Approaches to Group Facilitation in Second Life – Cindy Tandy, Scott Anstadt
IDRAC 2012 Presentation – 9:30 am PDT, August 4, 2012
Cindy Tandy is an Associate Professor of Social Work at Valdosta State University in Georgia. She is a gerontologist whose research areas include distance education, disability issues, and issues related to aging.
Scott Anstadt, Assistant Professor of Social Work at Florida Gulf Coast University, is co-author of “Towards a Research Agenda for Social Work Practice in Virtual Worlds.”
Tandy and Anstadt will conduct a panel discussion among support group leaders in Second Life. The panel will address the differences and similarities in facilitating support and/or discussion groups in SL and how to address the challenges of facilitating groups in SL. Panelists will respond in voice, with text transcription.
Invited panelists include:
- Fleet Goldenberg (Eduisland)
- Thunder Insippo (Virginia Society for Technology in Education)
- MusE Starsmith (Tricipian Centre)
- Spiff Whitfield (Virtual Pioneers)
- Kavon Zenovka (Virtual Worlds Best Practices in Education)
A True Story - Treacle Darlandes
A True Story – Treacle Darlandes
IDRAC 2012 Presentation – 11:00 am PDT, August 4, 2012
Treacle Darlandes is from the UK and is an artist and mentor in Second Life. She is co-owner of the Resident Help Network “White Tiger Mentors” group, the founder of its sister group “New Resident Services”, and builder of the White Tiger Help Island.
When she was only a few months old – dilly dallying around in Second Life, wondering what it was all about – she met someone who totally changed her view of the use of Virtual Worlds and this person was definitely instrumental in driving Treacle forward to the point where she is now – training new mentors, running a help island, building a community, and at any available opportunity reminding new users about the older, disabled or unwell residents we share this world with. Many new residents in fact tell her that they are grateful for the information and that it gives them a new perspective too.
Treacle’s “A True Story” is about learning to think about who is around us and about community inclusion.
Social-Emotional Outcomes of Second Life for Individuals with Disabilities - Richard Gilbert
Social-Emotional Outcomes of Second Life for Individuals with Disabilities – Richard Gilbert
IDRAC 2012 Presentation – 12:30 pm PDT, August 4, 2012
Richard Gilbert, Professor of Psychology at Loyola Marymount University in Los Angeles, CA, is an expert in the psychology of virtual worlds. Author of two books (The Third Condition: A Memoir of Freud’s Return, and How We Change: Psychotherapy and the Process of Human Development), Gilbert leads the P.R.O.S.E. (Psychological Research on Synthetic Environments) team at Loyola Marymount.
Gilbert and his research team recently concluded a study in the virtual world Second Life. There they surveyed persons with disabilities twice, first shortly after they entered the virtual world, and again three months later. The questions the researchers asked related to psychological well-being and adjustment.
The research team concluded that there were identifiable psychological benefits to persons with disabilities of being part of a virtual world. Gilbert will share the background, methodology, and results of this research during his IDRAC 2012 presentation.
Entertainment: Motivational Comedy - Jamie Jordan
Entertainment: Motivational Comedy – Jamie Jordan
IDRAC 2012 Presentation – 2:00 pm PDT, August 4, 2012
Jamie Jordan (JWheels Carver in Second Life) is here to entertain us. He is a 32-year-old entertainer who loves to make people laugh. If there is a stage and a mic, you can bet he’s there.
Jamie says, “I’ve been doing standup comedy for the last 11 years. Having cerebral palsy makes it hard to travel. Not being able to travel makes it hard to do standup which is what I love. Since finding Second Life a few years ago, I have become the hardest working man in SL. Most weeks I do at least four shows, including hosting SL’s biggest variety show, JWheels Presents.”
BRAVO BRaVO – Give it up for JJ! You are incredibly funny and everyone who hears you knows there is so much heart and soul and humor for all!
You are honest and man so damn funny!
Thank you for that great performance!
So funny! Thanks JJ. I loved it. your points were poignant and honest, striking oh so very true!