Monthly Archives: November 2016

Day 2 of the International Disability Rights Affirmation Conference

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Day 2 of the International Disability Rights Conference opened with a talk about L’Arche. The speaker was Melanie Saxon, Community Leader / Executive Director of L’Arche Jacksonville (FL). She shared some of L’Arche’s history and mission through the use of short videos  and her own words. I must admit I had never heard of them before and I am kind of ashamed of myself for that since they appear to do wonderful things.

Virtual Ability member Mook Wheeler has created a number of displays and exhibits on Healthinfo Island about l’Arche, Jean Vanier, and the concept of community for persons with disabilities. If you are in Second Life, please visit them.

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The second talk was 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. She got some group chat going about how our avatars interact and how they affect us. Having an avatar to go to a conference or get out and about to a support group makes life much easier for people with disabilities because they don’t have to leave home. It is especially important for people in rural areas or those who are isolated. We discussed a lot about safety on line and finding a community in Second Life. Members really wanted to have support and SL allowed people to find it while not leaving home. People also often want to represent themselves accurately and in SL you have to work at finding wheelchairs and canes. Also in SL architecture means you don’t need to have ramps and such for accessibility but many people feel it is an important political and educational statement to have them built in. Overall a fascinating and amusing talk. I have actually published on this topic.

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Our second speaker has been “in world” since 1994 and the in world experience in the early days consisted of IM style chat rooms of the era. He also talked about Mike from NYC who would not share anything personal but provided widespread and great support in a Parkinson’s group. Seven years later Mike from New York turned out to be Michael J Fox! Our speaker then told a third story was about a platform where people could use emoticons. And the ones that loved it the most were people with mobius syndrome, people who were unable to show facial expressions. In his fourth story he talked about how people with autism and aspergers practiced in SL (Brigadoon Island) to work on RL situations. Scary in Real Life became manageable in Second Life eventually making Real Life more manageable.

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The final speaker of the day was Shayla the Super Geeko who spoke about Persons With Disabilities and what happened to them on September 11. Over 200 PWDs died that day. Most did not survive because they could not evacuate. She then extended the concept to PWDs during disasters in general. We had a lot of talk about how PWDs have to make their own plans to be sure they get out in a disaster because depending on others will not work.

And so it was overall a fun, interesting and eye opening two day conference. I am very happy I was able to play a small part in the organization of the conference by finding introducers. Well done everyone involved!

International Disability Rights Affirmation Conference Day 1

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I (meaning Natalie) spend time in the virtual word of Second Life doing a variety of things both serious and work related and just plain fun. Today I am attending and have the honor of being an introducer in the International Rights Disability Conference hosted in Second Life by Virtual Ability.

Virtual Ability is a great place designed to provide support and community for people with disabilities. Each year they host a conference designed to promote rights for people with disabilities and to encourage fuller participation of people with disabilities in their own community.

I have been providing very occasional and small consultative help to Virtual Ability almost since they started in Second Life. It has been astounding to me to see how this have taken off and grown from a tiny single plot in Second Life to an entire huge multi-sim island in Second Life with a large and vibrant community.

Entry into the virtual world  can be a bit intimidating and since different people come into Second Life with different aims and desires, there can be difficulties while newbies are adjusting. Virtual Ability provides a gentler and much more supportive environment for newbies.

idrc-conference_003In Second Life we get to pick what we look like and here you can see me, right foreground in my “professional” av. I am sitting with a cowboy, a geeko and turtle and another human. I have all kinds of other avatars for less serious events.

The conference covered a wide range of topics.

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We began with Caroline Pavis of Johnson and Johnson who talked about their HealthEVoices disability bloggers conference. Their next conference is in 2017 in Chicago and they hope to encourage interaction between various disability and health advocacy and support groups across a wide variety of people from those living with HIV to those with intellectual and emotional disabilities. She talked about the benefits of the conference and after we had a lively discussion about how Second Life, and other Virtual World media could be integrated into their setting.

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Our second set of speakers were from South Africa. This is one of the nice things about a Second Life conference. You can have people come from all over the world and yet all feel together.Theresa Lorenzo and Siphokazi Sompeta of the University of Cape Town, South Africa, spoke about their research on ways to make disability-inclusive services available in rural areas of South Africa, Botswana and Malawi. She described problems like lack of local transportation and lack of practical skills for dealing with people with disabilities. For example, they taught taxi drivers how to better transport people with disabilities. Ms. Sompeta described being in Second Life as like being in a spiritual world, a lovely and apt metaphor.

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I was introducer for the next session which was a panel of presenters from the Chronic Pain Anonymous group. styled after Alcoholics Anonymous but geared entirely to people who live with chronic pain due to many different health conditions, the group provides a supportive environment without advocating any specific treatment or protocols. Rather it helps people to live well and at peace with themselves even though they also live in chronic pain. By coincidence, I had attended a group session as a family member of someone living with chronic pain. So I got to experience the reality of the support available.

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The next speaker for today was Dr. Margaret Nosek and her colleagues. They presented on “Women with mobility impairments in community weight loss programs: Exploring new venues in virtual worlds.” Obesity and being overweight is really a problem for people with mobility impairments. Over 50% of people with mobility impairments are obese. Yet exercise, the major tool for effective weight loss is not something easily available to those with limited mobility. The talk centered on things that can be done.

The final speaker was Maggie Sheets with the Disability Policy Consortium of Massachusetts. She explained the importance of including people with disability in policy making.

So we had the conference and there were many side conversations and instant messages as well as group chat going on during the conference so it was fun and stimulating and I felt really connected. I also didn’t have to fight airports, a strange bed with a room full of strange scents that make me wheeze, worrying about food when I have so many allergies and all the usual stresses of going to a conference. It was a great experience.

The conference continues tomorrow.