Virtual Ability, Inc.® presents the 5th Annual
International Disability Rights Affirmation Conference
November 18 and 19, 2016
in Second Life at
http://maps.secondlife.com/secondlife/Virtual%20Ability/54/170/23
Virtual Ability, Inc.® presents the International Disability Rights Affirmation Conference (IDRAC), which will take place November 18 and 19, 2016. This is an annual professional conference held online, that is free and open to the public. The conference will take place in Second Life® at The Sojourner Auditorium on Virtual Ability.
This year’s theme is “We’re Part of the Community.” This theme is broad and open to interpretation by the presenters we invited to this year’s event. If past conferences are any indication, we look forward to lively discussions and information sharing among presenters and our very interested and interactive audience.
Below is an at-a-glance schedule of the presenters who will share their observations of the progress, benefits and challenges in disability rights in different parts of the world as applied to the current theme. We will provide more information about the speakers and their presentations as it becomes available. Note: All times are listed in US Pacific Standard Time.
IDRAC 2016 Schedule of Events
All times in SLT/PDT| Friday | ||||
| Time | Presenter | Title | Description | Transcript |
| 8:00 AM | Caroline Pavis | Engaging and Empowering Online Health Communities | For the past two years, Janssen (Pharmaceutical Companies of Johnson & Johnson) has hosted HealtheVoices, the first-ever conference focused on bringing together online patient health advocates to help them further grow and engage their online patient communities. Nearly 100 leaders of online patient communities, also known as bloggers or patient opinion leaders, attended the conference in 2016. These advocates represent a wide variety of health conditions and diseases. | IDRAC 2016 IDRAC 2016 Caroline Pavis Transcript |
| 8:30 AM | Shyla the Super Gecko (KriJon Resident) | 9/11: The PWD Story | On September 11, 2001, Shyla was enjoying a day off, resting on her sofa when the first news reports of the terrorist attack aired. Shortly thereafter, her co-workers were sent home as a nation began to grieve and much of the world with it. She worked as a business partner with several people in the Towers that day, and remembers the anxiety as she and her staff waited for confirmation they were all okay. Sadly, she would come to know not all of them survived. She did not see herself as disabled at that time, nor did she consider the context of the stories being conveyed about people with disability who were saved on 9/11. But as the 15th anniversary approached this year, Shyla wanted to learn the story of her community as it related to 9/11. What began as a historical curiosity revealed serious issues about how our stories are told by a predominantly able-bodied media and the inclusion and consideration of PWDs (People With Disabilities) in emergency planning even today. | IDRAC 2016 Shyla the Super Gecko |
| 9:30 AM | Professor Theresa Lorenzo and Siphokazi Sompeta | Creating Inclusive Communities: The Role of Community Disability Practitioners in Africa | Persons with disabilities and their families still experience stigma and a high degree of social exclusion especially in rural communities, which are often poorly resourced and serviced. Disability-inclusive development requires a workforce equipped with skills to work intersectorally and in a transdisciplinary manner in order to that will promote delivery of services in remote and rural areas. | IDRAC 2016 Theresa Lorenzo and Siphokazi Sompeta |
| 11:00 AM | Chronic Pain Anonymous | Pain is a sensation generated in the nervous system. Two kinds of pain are recognized: acute and chronic. Acute pain is a message to the body that something is wrong, perhaps an injury. It goes away when the cause of the pain is addressed. Chronic pain is different, and can exist for months without an apparent cause although sometimes it begins from an injury. Chronic pain can be debilitating, affecting all aspects of a person’s life. One study found that in various countries between one in ten and half of all persons deal with chronic pain, and that it is more common in men than in women. People with chronic pain often use distraction as a self-management technique to deal with their symptoms. Virtual worlds can provide plenty of distraction, so it should not surprise SL users that some of us live with chronic pain. The peer support group Chronic Pain Anonymous (CPA) offers fellowship with others dealing with chronic pain in a variety of environments, face-to-face and electronically-mediated. CPA came into Second Life in 2016 as an expansion of community venues. On Friday, November 18, at 11am Pacific, a panel of CPA members will share their lives and their experiences with CPA, both outside and inside the virtual world. | IDRAC 2016 Chronic Pain Anonymous | |
| Saturday | ||||
| Time | Speaker | Title | Description | Transcript |
| 8:00 AM | Melanie Saxon | The L’Arche Story | L'Arche began in 1964 when Catholic theologian Jean Vanier visited French asylums for persons with intellectual disabilities. He was overwhelmed by the sadness of these institutions, and recognized the need of their residents for being part of a community. He bought a small house in Trosly-Breuil (France) and invited two men to move out of an asylum and live with him. That home still exists, and Jean Vanier still lives there. | IDRAC 2016 Melanie Saxon - L'Arche |
| 9:30 AM | Dr. Margaret Nosek | Is your avatar a bulletproof vest? | Dr. Margaret Nosek, Professor of Physical Medicine and Rehabilitation at Baylor College of Medicine (Houston, TX, US) and two co-presenters, Stephanie Silveira and Rachel Markley, will describe their work conducting challenging conversations for women with disabilities in virtual worlds. The Center for Research on Women with Disabilities (CROWD) at Baylor has conducted research with women with disabilities on several dicey topics, including sexuality, reproductive health, bladder and bowel management, weight management, and self-esteem. In their presentation, Nosek, Silvera and Markley will talk about feedback women have given them when they discuss some of these topics in Second Life and some of the difficulties and successes they have experienced in trying to make related information available online and in virtual worlds. | IDRAC 2016 Margaret Nosek and Stephanie Silveira |
| 11:00 AM | Pathfinder Lester | But you’re not supposed to use it that way! | Exploring how people shape technologies to empower online communities.’ In this presentation, John will tell his story of how a continuing quest for more emotional bandwidth and perceptual immersion was enlightened by communities of people who often used technologies in completely unexpected and breathtakingly beautiful ways. | IDRAC 2016 Pathfinder Lester |
IDRAC 2016 Speaker Biographies
Biographies are listed in alphabetical order by last name.| Speaker | Biography |
| Chronic Pain Anonymous | Pain is a sensation generated in the nervous system. Two kinds of pain are recognized: acute and chronic. Acute pain is a message to the body that something is wrong, perhaps an injury. It goes away when the cause of the pain is addressed. Chronic pain is different, and can exist for months without an apparent cause although sometimes it begins from an injury. Chronic pain can be debilitating, affecting all aspects of a person’s life. One study found that in various countries between one in ten and half of all persons deal with chronic pain, and that it is more common in men than in women. People with chronic pain often use distraction as a self-management technique to deal with their symptoms. Virtual worlds can provide plenty of distraction, so it should not surprise SL users that some of us live with chronic pain. The peer support group Chronic Pain Anonymous (CPA) offers fellowship with others dealing with chronic pain in a variety of environments, face-to-face and electronically-mediated. CPA came into Second Life in 2016 as an expansion of community venues. On Friday, November 18, at 11am Pacific, a panel of CPA members will share their lives and their experiences with CPA, both outside and inside the virtual world. |
| John Lester | Known in Second Life as Pathfinder Lester, has been working with virtual worlds and online communities since the 1990s, creating online patient support groups at Massachusetts General Hospital for people dealing with neurological disorders, developing online immersive learning environments for students at Harvard, and helping build communities in Second Life that assist people living with disabilities. He worked at Linden Lab for 5 years where he founded Linden Lab's Boston Office and led the development of the education and healthcare markets in Second Life while evangelizing the innovative use of virtual worlds in research, art and immersive learning. John has also worked on multiuser virtual world development using the Unity platform, built bespoke multiuser VR worlds for education using the Oculus Rift, and dabbled with artificial life in augmented reality. John continues to follow his passion for online communities and virtual worlds through his consulting and contracting work, designing and building immersive learning experiences using platforms such as OpenSimulator and Unity. He also serves on the Board of Directors of Virtual Ability, Inc., a non-profit organization that enables people with a wide range of disabilities by providing a supporting environment for them to enter and thrive in online virtual worlds like Second Life. At his day job, John works as a Product Manager at OpenText where he does R&D in unstructured data analytics and enterprise information management. John has been working with online communities and virtual worlds since the early 1990’s, beginning with modem-powered BBS systems through early web-based forums and chatrooms and continuing with immersive multiuser 3d virtual worlds. Focusing on education and support, John has experienced a wide range of use cases and insights into how human behavior simultaneously shapes and is shaped by these tools. |
| Professor Theresa Lorenzo and Siphokazi Sompeta | Professor Theresa Lorenzo is an occupational therapist and PhD Programme Convenor in the Division of Disability Studies, Department of Health and Rehabilitation Sciences, Faculty of Health Sciences at the University of Cape Town (South Africa). She has extensive experience in engaged scholarship focused on developing a transdisciplinary community-based workforce to facilitate the implementation and monitoring of disability-inclusive development in Africa, with a focus on youth and women. Her Second Life name is Fish Eagle. Siphokazi Sompeta (née Gcaza) is also an occupational therapist in the Division of Disability Studies, Department of Health and Rehabilitation Sciences, Faculty of Health Sciences at the University of Cape Town. She was the former chair of the Community-based Rehabilitation Africa Network that has advocated for the implementation of inclusive development programmes with a particularly focus on rural communities. Her research has explored chronic poverty of disabled persons in rural areas and the training of community rehabilitation workers. Her second life name is Vulithongo, which means Dream Opener in Isi-Xhosa, her mother tongue. Together they will present an academic paper that explores the local experiences and practices of community-based disability workers (CDWs) in resource-limited rural communities in Botswana, Malawi and South Africa. It explores CDWs’ activities and strategies to contribute to improving the lives and increasing the levels of social, economic and political inclusion of people with disabilities, their families and communities. They argue that these competencies should be consolidated and strengthened in curricula, training and policy. Three main themes emerged demonstrating the competencies of CDWs. First, integrated management of health conditions and impairments within a family focus. Second, negotiating for disability-inclusive community development. Third, coordinated and efficient intersectoral management systems. |
| Dr. Margaret Nosek | Dr. Nosek, PhD, is Senior Scientist at TIRR Memorial Hermann and Adjunct Professor in the College of Nursing at Texas Woman’s University, both in Houston. She researches ways to improve the health of women with physical disabilities, especially by improving reproductive health and access to healthcare services. She has conducted many large studies in Second Life. Dr. Nosek is a member of the Board of Directors of Virtual Ability, Inc. She is a woman with a severe physical disability, and is a lifelong disability rights activist. She has won many honors both for her academic research and her activism. Stephanie Silveira is a Graduate Research Assistant at University of Houston Department of Health and Human Performance, Baylor College of Medicine Center for Research on Women with Disabilities (CROWD), and TIRR Memorial Hermann. She is a fourth year doctoral student in kinesiology at the University of Houston with an interest in health promotion for individuals with mobility impairments. Her undergraduate degree is in psychology, where many of her current research interests reside, particularly as related to nutrition and physical activity. She was the project manager for CROWD’s GoWoman virtual reality weight loss intervention for women with mobility impairments. She is currently involved on several projects including a weight loss intervention for men and women with spinal cord injuries and a pilot nutrition and body composition measurement study of former and current heroin users receiving a virtual reality intervention. She led a team in reviewing literature on obesity measurement in people with spinal cord injuries, including an examination of the most accessible and valid ways to measure fat mass, height and weight. Stephanie has conducted cross-sectional psychological research with wheelchair rugby athletes. She hopes to pursue this area further in order to help individuals with mobility impairments improve their quality of life through physical activity and exercise. She is also personally invested in training adaptive Crossfit athletes. She plans to focus her research career on reducing obesity in populations experiencing health disparities using telehealth and virtual reality interventions. Rachel Markley, MPH, is a 2015 graduate of the University of Texas School of Public Health. Ms. Markley is a research assistant at the Center for Research on Women with Disabilities at TIRR Memorial Hermann and is involved in studies to develop health promotion interventions and expanded women’s health services for women with physical disabilities. She served as part of the research team for the GoWoman Virtual Reality Weight Management Program for Women with Mobility Impairments, and co-facilitated the development of an Internet-Based Empowerment and Self-Esteem Enhancement Intervention for Women with spinal cord injury, a 7-week intervention held in Second Life. Ms. Markley has significant physical limitations due to Spinal Muscular Atrophy. |
| Caroline Pavis | For the past two years, Janssen (Pharmaceutical Companies of Johnson & Johnson) has hosted HealtheVoices, the first-ever conference focused on bringing together online patient health advocates to help them further grow and engage their online patient communities. Nearly 100 leaders of online patient communities, also known as bloggers or patient opinion leaders, attended the conference in 2016. These advocates represent a wide variety of health conditions and diseases. On Friday, November 18, the 2016 International Disability Rights Affirmation Conference (IDRAC) will begin with a presentation at 8am Pacific by Caroline Pavis, Communications Leader, Janssen Oncology & Immunology. In her presentation, Ms. Pavis will share highlights of the 2015 and 2016 HealtheVoices conferences, and discuss plans to host a third HealtheVoices on April 21-23, 2017, in Chicago. Caroline Pavis currently serves as Communications Leader for Janssen Biotech, Inc., a division of Johnson & Johnson, where she oversees integrated public relations and communications initiatives for Janssen’s Oncology and Immunology Business Units. Caroline joined Johnson & Johnson in 2011. Prior to joining Janssen Biotech, Caroline served as Director, Global Communications for Johnson & Johnson Diabetes Care where she led internal and external communications on behalf of the global franchise and served as a member of the Animas Management Board. With nearly 20 years of public relations and corporate communications experience, Caroline joined Johnson & Johnson from GolinHarris, a global public relations consultancy agency, where she was responsible for overseeing strategic marketing programs for several pharmaceutical, medical device and consumer healthcare companies. Caroline lives in Coopersburg, Pa. with her husband and three kids, where she is adjusting to the quiet country life (and endless yard work) after moving from the big city of Chicago. |
| Melanie Saxon | Melanie Saxon, Community Leader / Executive Director of L’Arche Jacksonville (FL) will share some of L’Arche’s history and mission through the use of short videos. The facilities of L’Arche Jacksonville include four homes, a community center and the Rainbow Workshop day program. Ms. Saxon’s previous roles include Executive Director of the North Central Florida Chapter of the American Red Cross, Development Director of University of Florida Performing Arts, Executive Director of Voices for Kids of Southwest Florida and Executive Director of the North Central Florida AIDS Network. In addition, Ms. Saxon has raised funds for United Way, the Alzheimer’s Association and the Juvenile Diabetes Foundation. She served as Executive Producer of the Florida Film Festival and has coordinated numerous arts in education programs in K-12 schools, along with teaching third grade. Her additional volunteer experience includes serving as a Rotarian, a Stephen Minister, and a Big Sister. |
| Maggie Sheets | Maggie has worked at the Disability Policy Consortium in Malden (Massachusetts, US) since July of 2014. Most recently, Maggie has conducted research and has written four issue briefs on topics of concern to people with disabilities. These include: access to SNAP benefits, access to affordable housing, domestic abuse faced by people with disabilities, and issues people with disabilities who age-out of the educational system at age 22 confront. She has also been providing technical support to a research team examining the healthcare experiences of One Care (health insurance program) enrollees. She is also creating a resource guide with contacts and information to help people with disabilities who are experiencing violence. In the past, Maggie managed all logistics for five discussion groups with MassHealth enrollees to learn more about their healthcare experiences. Results from a discussion group involving homeless individuals with disabilities will be submitted for publication in the Disability and Health Journal. She also conducted outreach to college students with disabilities to encourage them to become more involved in disability advocacy. Prior to working with the Disability Policy Consortium, Maggie worked as a Program Associate with Community Catalyst providing technical assistance to a research team examining conflict of interest issues in medical education. Maggie holds a Master’s Degree in Health Communication from a program from Emerson College in collaboration with Tufts University School of Medicine. Her personal motto is: Everything will be all right in the end and if it is not all right it is not yet the end. |
| Shyla (KriJon Resident) | Shyla is a former storm chaser, outdoor adventurer and comedian who, to pay the bills, developed industry specific solutions and implemented enterprise wide systems for Fortune 500 companies. Shyla is a published author, editor, blogger and poet. She is also a caregiver. In Second Life, Shyla is a Super Gecko and wears a pink cape to note the distinction. She has never met another Gecko in SL, so there is really no way for her to compare her 'gecko-ness' to any other. However, as far as geckos go, she likes to think she is pretty super. She enjoys customizing, building and texturing in Second Life. She creates theme builds on her Nautilus Island parcel to benefit organizations in Second Life assisting People With Disabilities. |