June 23, 2006 SL, ShockProof, Dreams...What is the Connection?
In attendance: SP - The Sojourner, oomska Vilas, Tremali Lightworker, Marie Hightower, Em Warrior, Franja Russell, Polaris Grayson, Yasamine Grayson, Robin Linden, Dreams - Llauren Mandelbrot, Joy Darrow, falldeaf Weeks, Monkey Edge, Happy Dimsum Others - Sorcs Nolan. Drak Shackle, Molly Montale, Andy Rote, Rico Otoro, Sarah Braess, Mystical Cookie, Ethan Bruder, Larkin Cordeaux, Vortex Saito
Brief explanation of BrainTalk, how ShockProof and Dreams came into being, and the connection between them. Because of the number of attendants, we took a question and answer approach.
What can SL provide that RL can't? 1. it increased muscle strength through typing in a natural way or without making it seem like a workout. 2. movement capabilities such as walking, running, flying. 3. allows people with common inabilities to get together and brainstorm. 4. allows a real time connection. 5. provides a sense of community. 6. provides a spatial awareness and freedom and, as oomska said "a profound form of expression." 7. a sense of family. 8. " for those who are new to virtual worlds and computer programming, they are building new skills--good at any age--and making the body lay down new nerve paths." 9. allows you to develope or change social skill patterns. 10. allows you to maintain social skills. 11. over time, things get easier, faster. 12. SL pulls you into activities naturally. 13. abilities in SL begin to build upon each other. 14. success in doing things in SL "encourages you to try things in real life that you shied away from." 15. SL can be an equalizer... able bodied individuals can experience as much difficulty as those with a disability and those with a disability can shine in an area where an able bodied person may not.
How difficult is it to make a connection? Do you feel more open to discussing your stroke or relationship to stroke here than in RL? 1. depends on where you are and your needs but it can be very difficult in RL. 2. all that answered, answered "yes."
Does the idea of Dreams as an activity base provide assistance in this? 1. Dreams is still evolving. 2. all that answered, answered "yes" or "in some ways." 3. Request: Post a monthly calendar of meetings and events. Response: This is already available at the entrance but we will soon have a website also.
How do you cope with the loss of someone who has a stroke and the fear it creates? Is it selfish? 1. Coping mechanisms include withdrawl from family and friends in SL and RL. when frustration gets too great, digging deep and finding SOMETHING to focus on and improve. "doing" instead of "thinking" "Simplify" Changing eating and exercise habits. Getting blood testing to be better prepared and knowlegeable. 2. loss is a very real issue. 3. Fear issues seemed to be different for stroke survivors than for family members for the stroke survivor, it almost reduced the fear because they were busy coping with the effects for the family member, it increased the fear because they could see what it did not only to the person with the stroke but the family more globally Geographical distances between the stroke survivor/victim and the family member is very anxiety-producing and increases a sense of helplessness. lack of control=sense of uncertainty=fear and depression 4. Venting.. which while it is good in general, it is not good if directed at the person with the disability
What are some of the effects of stroke on family members? 1. Frustration 2. Fear 3. Anxiety 4. Wanting to be involved but not being able to due to geographical or family issues 5. Depression 6. Anger that the stroke survivor is not pulling their weight/trying hard enough/fulfilling a needed role 7. Stress 8. Physical and emotional fatigue
What are some of the effects of stroke on the survivor? 1. Frustration 2. Depression 3. Feeling lack of control and role/identity 4. Awareness of changes and not wanting to be a burden 5. Anger that the family members can not see/accept they are doing what they can 6. Stress
Do you think about stroke/fear every day? 1. Mixed results but mostly the stroke survivors or people with other disabilities said "no" while the family members said "yes." 2. Seeing the impact on family members directly involved with the stroke victim is excruciating - physically, financially, emotionally.
What are some methods of stroke prevention? 1. Caring for self. Eat properly, exercise, watch blood pressure. 2. Be aware of family histories. 3. Be sure you are heart-healthy. Many stroke survivors are victims of heart disease or have a PFO (patent foreman ovale) that are not aware of the connections between them and stroke. 4. If you are at risk for stroke, esp through a genetic factor, get blood tests to look at clotting disorders and genetic testing 5. Be assertive. The medical community does not always look seriously at blood pressure of certain varieties or at early stroke as important. There are autoimmune disorders that can cause stroke at an early age. The systolic blood pressure is just as important as the diastolic. 6. Get a copy of ALL test results and if possible films/CDs of the tests. Hospitals and doctors offices are now allowed to purge files after 4 years. What can LL do to help the person with compromised abilities in SL? 1. There is a need from Linden Lab to make SL easier to use for people with physical and deafness issues and that when they (Linden Labs) are developing new technical changes, to be sure it is adaptable. 2. Robin replied that she would "love to see us start to incorporate better UI features for people with disabilities -- font options, close captioning and so on... non-traditional peripheral support." 3. Soj mentioned the need for a method of building for a one handed typist without using both keyboard and mouse. 4. Joystick support? 5. Repeater plus voice for Linden discussions. 6. A meeting to draw up some suggestions with Lindens. What problems do you experience in SL that are not as present in RL? 1. don't have tone of voice 2. dont have facial expression 3. reliance on gestures in RL 4. difficulty in catching jokes (esp if someone has a dry sense of humor) 5. taking an av's position literally is stronger since you have typed conversation and no access to gestural communication.
Would it be a goal of ShockProof to bring our families into SL to increase communications and allow greater understanding in a different forum? Could SL provide a "safe" place for families and survivors/people with disabilities to address some of the issues pertaining to the conditions? 1. difficult to get them to want to be involved. However, SL might provide an avenue to get them involved. 2. might be a good avenue for members of the extended family to be involved. 3. question of whether family interference and personality conflicts might take the enjoyment and freedom out of SL 4. be nice to set up an experiential setting where the family member could experience some of the same frustrations that a person with a disability encounters in RL. However, a visual experience will not duplicate a RL experience 5. What is "safe?" SL provides a situation in which you are speaking from an avatar which provides more distance than speaking directly to the person so it keeps it more topic related. Problem: "to people unused to the medium there are challenges in not having the non-verbal parts of communication there." Reading too much into a statement.