http://www.invotek.org/home/ http://www.invotek.org/community/blog/open-dialog/#PageComment_4716 “How do ABs know when a topic is ok and when they should back off?” In my opinion, and my experience, any subject is okay with me. I particularly like topics, like bicycling, motorcycling, canoeing, fishing and gardening. I used to do all of these things and miss them of course, but it's still enjoyable for me to discuss them. For example, I like to discuss motorcycling stories with Tom, in spite of the fact that it was a motorcycle accident that caused my injury. The bottom line is that I am okay with discussing any subject, including my health issues. Fri, 13 Apr 2012 17:12:48 -0500 Martin Willems http://www.invotek.org/community/blog/open-dialog/#PageComment_4716 http://www.invotek.org/community/blog/open-dialog/#PageComment_4664 Wes / Robert- Thanks for your thoughts. I appreciate you guys. Tue, 27 Mar 2012 09:26:25 -0500 John Riggins http://www.invotek.org/community/blog/open-dialog/#PageComment_4664 http://www.invotek.org/community/blog/open-dialog/#PageComment_4638 I believe that avoiding the subject would be a mistake. Indeed, there are ways to communicate about the topic of walking that may bother people in chairs, like myself. However, I feel it's all about reading the situation. Someone who has just recently lost their mobility may be less receptive of the topic and therefore a person might want to tread lightly. Have your discussion but be sensitive. We need this sense of normality as a part of our "healing." Then there are long-term disabled such as me that have come to terms with their disability and are simply looking for a normal conversation with someone that isn't scared of them being in a chair! I absolutely think "AB's" should talk with us if they simply understand that we are people and have lost something but are seeking the closest level of normality possible. very good to see this issue addressed! Fri, 23 Mar 2012 09:49:05 -0500 Wes Wilson http://www.invotek.org/community/blog/open-dialog/#PageComment_4638 http://www.invotek.org/community/blog/open-dialog/#PageComment_4637 i think that is a great question. Some time I have the problem of saying things without thinking so I may not be the best person to ask but I believe that no matter who you are dealing with you will always have someone who probably does not like what you have to say. If I ran a marathon my legs would be sore too so there is no reason for anyone to hold that against you. But as someone who is handicapped I thank you do become numb to small problems such as sore legs, headaches, normal everyday become a chore Fri, 23 Mar 2012 09:45:18 -0500 Robert Robinson http://www.invotek.org/community/blog/open-dialog/#PageComment_4637 http://www.invotek.org/community/blog/open-dialog/#PageComment_4636 John, Thanks for this post. I think lots of people worry about this sort of thing -- and I think it is something that needs to be talked about more. If ABs (able bodies) are afraid of what they can and can't say, their natural reaction will be to avoid people with disabilities. And that is a loss for everyone. Wed, 21 Mar 2012 09:50:51 -0500 Tom Jakobs http://www.invotek.org/community/blog/open-dialog/#PageComment_4636 http://www.invotek.org/community/blog/contributing/#PageComment_4628 You CAN do it Wes--we just have to pray that someone will give you a chance to shine!!! Fri, 09 Mar 2012 17:59:31 -0600 Tami Williams http://www.invotek.org/community/blog/contributing/#PageComment_4628 http://www.invotek.org/community/blog/the-voice-of-experience/#PageComment_4534 Thanks George. It is funny -- some of your comments seem so straightforward, but I seriously doubt many able-bodied folks will really "get it" when they read them. My favorite line from your blog is "The unexpected becomes the normal routine". Even with all the work I do with Be Extraordinary, I am constantly surprised by -- and to be honest, often frustrated by -- the lack of "normal" in our client's lives. I cannot imagine how you deal with this daily uncertainty. Everyone in our society expects a normal. We eat normal meals, we go to school at a normal time, and we work normal hours. I don't know what it is like to have to give up "normal" over and over again. I think it would be a lot harder than dealing with the obvious physical limitations that come with a spinal cord injury. Thanks for continuing to teach me. There is much to learn and I am grateful to you and the rest of my teachers. Thu, 12 Jan 2012 08:22:07 -0600 Tom Jakobs http://www.invotek.org/community/blog/the-voice-of-experience/#PageComment_4534 http://www.invotek.org/community/blog/breakfast-at-d-s/#PageComment_4533 Wow. What a wonderful story. I am proud to have you as my little sister. Thanks for sharing this. It is really important. Love, Thomas Mon, 09 Jan 2012 12:20:23 -0600 Tom Jakobs http://www.invotek.org/community/blog/breakfast-at-d-s/#PageComment_4533 http://www.invotek.org/community/blog/christmas-reflections/#PageComment_4532 George, Thank you so much for sharing your post. Your story being inspirational hardly scratches the surface. I hope you continue to write your journey for others to read. I certainly appreciate your words, as the new year starts it is reminding me to be extra diligent to appreciate those that I overlook, like you mentioned with your wife and caretakers. Happy New Year to you and your family! Tue, 03 Jan 2012 14:35:08 -0600 Bettina Mihai http://www.invotek.org/community/blog/christmas-reflections/#PageComment_4532 http://www.invotek.org/community/blog/breakfast-at-d-s/#PageComment_4531 Of course, I love reading your blog because your my big brother and I have, since I can remember, tried to emulate the kind of human being you are in the world. Since becoming a cross country commuter for work, and having never lived or spent any time in a big city, New York is not exactly big city with training wheels. I stay on the upper west side of the city, affluent area by any standard, and each morning a black town car comes to pick me up and take me to inner city areas where I do my work. Before I go literally across the bridge for my day's adventure in failing public inner city high schools, I stop at good ole Starbucks for my morning soy latte and drip coffee for my friend William who drives me all over the place. I started this journey last January when you can only imagine how cold the city becomes. I met a woman, homeless and haggard, on one of my first visits at the local starbucks. She is about 50 I would guess, dressed in black rags, literally, that she binds around her body, carrying a large black suitecase with all her belongings in the world. The hussle and bussle of NYC can be overwhelming. Somehow this woman was finding her way amongst some of life's greatest challenges. The first morning I saw her I offered to buy her coffee. She looked at me, all dressed up and well fed, and said, thanks, but no thanks, can I buy you a coffee? and that started a journey with this woman that has lasted the whole year long. I found out her name was Rae, she suffers from mental illness and lives both in Central Park and on any local park bench she can find where the NYPD will leave her alone. I have watched her from afar, as trying to talk to her posed a bit dangerous as I found out the hard way one sunny afternoon sharing a park bench with her in Central Park. A few weeks ago, I happened to stay over a weekend in the city and one of my closest friends came to stay with me for a girls weekend. As we were walking around I was telling her about my "from a distance" relationship with Rae. The barristas at Starbucks worked with me to make sure she was fed each day, without her knowing it was me that was helping her. I was sharing my concern with my friend about what will happen when I no longer work in the city, as if I was the only person in the world who had helped her along the way, amazing how short sided and self absorbed. As we came around the corner near the starbucks, I saw Rae, sitting with an older gentleman, sharing a huge meal, with the sun on their faces, not really talking but sitting so close together they had to be related or know each other very well. As I looked at the both of them, there was a similarity in their faces that showed the world they were related, brother and sister. The next day, as I walked the common path by the starbucks again, this man was sitting with Rae, feeding her, spending time with her, no words spoken, just there. I can only imagine the path that both have taken, the pain, they have both suffered, and how they have come to this place, sitting together on a weekend, sharing a meal. The beauty of human beings caring for one another is awe inspiring, the best of what is here on Earth. Thanks for your story big brother, and congratulations on Sammy:) Tue, 03 Jan 2012 13:05:49 -0600 Bettina http://www.invotek.org/community/blog/breakfast-at-d-s/#PageComment_4531