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    Cure and "benefits of disabilty"

    "At one time I thought there were no benefits to being disabled, but those were the early days while I was still in a rehab ward and had not yet been exposed to the many programs and services that awaited me when I was finally released. During those first few months, many pleasant surprises awaited me."

    http://www.spinalcordinjury-paralysi...ility#comments

    As long as one of the most important SCI org posts things like that I don't see a cure coming very soon as it actully does the opposite than creating a sense of urgency to find a cure.

    If we don't react things will just get worse.. What do we have to loose?...
    ...hops I forgot all those benefits!

    Paolo
    In God we trust; all others bring data. - Edwards Deming

    #2
    Thanks for keeping things real Paolo. I enjoy following your postings.

    Comment


      #3
      It's a real shame that SCIs apparently have the ability to affect people's brain. In some ways I am jealous of the completely insane SCI patients because to live in delusion would be a relief. But let's call this what it is: fucking bullshit.

      Comment


        #4
        Originally posted by paolocipolla View Post
        "At one time I thought there were no benefits to being disabled, but those were the early days while I was still in a rehab ward and had not yet been exposed to the many programs and services that awaited me when I was finally released. During those first few months, many pleasant surprises awaited me."

        http://www.spinalcordinjury-paralysi...ility#comments

        As long as one of the most important SCI org posts things like that I don't see a cure coming very soon as it actully does the opposite than creating a sense of urgency to find a cure.

        If we don't react things will just get worse.. What do we have to loose?...
        ...hops I forgot all those benefits!

        Paolo
        Preparing it right now!
        Dennis Tesolat
        www.StemCellsandAtomBombs.blogspot.com

        "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
        Martin Luther King

        Comment


          #5
          - Different means to cope, huh? - Sad. Just sad.
          "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

          Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

          Comment


            #6
            Don't piss down my back and tell me it's raining.

            Comment


              #7
              In my mind this guy's mentality (from the article) is along the lines of intentionally doing something illegal to get thrown in jail so you get a roof over your head, three squares and free health care.

              I think all these so called perks of being disabled are offered as a bare minimum to convince folks that it is worth trying to move on again after a SCI.

              The guy doesn't have a clue.
              Last edited by Patton57; 23 Nov 2012, 9:47 AM.

              Comment


                #8
                Great responses on CDRF blog Paolo. Does anyone think Chris Reeve would have been happy with that response. Keep your f'n benefits cure my son I'm sure he would not mind walking the distance in a parking lot, or going to school again without fear of having an accident, or making his own money, What the hell happens to organizations that start out by saying we are looking to find a cure and then wind up becoming advocates for everything but.
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

                Comment


                  #9
                  He forgot to include curb ramps, stair lifts, hand controls and HC toilet stalls.
                  I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

                  Comment


                    #10
                    When members of this directorship earn salaries that stand up to the salaries of for-profit multi-million dollar organisations you would expect repeated PR mistakes to be punished accordingly - ie you're fired!

                    If you want to run an organisation in such an amateurish way, hire grass-roots volunteers as they would do a much much better job of communications (and research strategy for that matter).

                    Just saying.
                    Last edited by Fly_Pelican_Fly; 23 Nov 2012, 2:58 PM.

                    Comment


                      #11
                      While his tongue may not be firmly in his cheek I think there's a fair amount of irony employed in the article and also an underlying sadness.

                      Nobody with a disability can take the opening paragraph seriously........

                      "Thanksgiving is just around the corner, and Christmas will follow shortly thereafter. This seems like an ideal time to have a frank discussion about the many benefits of having a disability in this day and age."

                      Comment


                        #12
                        Originally posted by Timaru View Post
                        While his tongue may not be firmly in his cheek I think there's a fair amount of irony employed in the article and also an underlying sadness.

                        Nobody with a disability can take the opening paragraph seriously........

                        "Thanksgiving is just around the corner, and Christmas will follow shortly thereafter. This seems like an ideal time to have a frank discussion about the many benefits of having a disability in this day and age."
                        Yet many never get past the first sentence and form an opinion, and say they read....... here, and it says,,,,,, there,,,, so,,,, you see,,,,,, you are lucky!!!!!!

                        Comment


                          #13
                          Originally posted by t8burst View Post
                          Don't piss down my back and tell me it's raining.
                          Liked it.

                          Comment


                            #14
                            Originally posted by Timaru View Post
                            While his tongue may not be firmly in his cheek I think there's a fair amount of irony employed in the article and also an underlying sadness.

                            Nobody with a disability can take the opening paragraph seriously........

                            "Thanksgiving is just around the corner, and Christmas will follow shortly thereafter. This seems like an ideal time to have a frank discussion about the many benefits of having a disability in this day and age."
                            Thank you! That's exactly how I read Collins' piece. For those calling for Wilderotter's head on an platter, I want to tell a story.

                            I attended W2W and met Sam Maddox. Sam invited me to join his Blog Squad and we've been discussing it since. This is what I learned: each blogger has autonomy and their own voice. There is no Reeve oversight. We each "own" our content for better or worse. No one approved Michael Collins' blog because Reeve believes that everyone has their own story to tell and that should be honored. Sam told me that I will be responsible for my content and my mistakes; no one reviews and approves the blogs.

                            I also had the opportunity to join 3 other wheelers at a meeting at the Reeve Foundation last week. I was suspicious and asked Peter Wilderotter point blank if he directed Sam to invite me to the Blog Squad since I've been such an outspoken critic of CDRF for so long. He had no idea what I was talking about. I sat with Michael Manganiello for two days in discussion of legislative strategy. Again, the breadth of the Reeve vision was astounding. We talked about the strengths and weaknesses of CDRF. The folks there were exceptionally gracious and humble. I was surprised and humbled myself to learn to that some of my more bombastic opinions were completely out of line. This is a WORKING office of individuals dedicated to this cause. I also learned that any wheeler that shows up, gets the same level of attention that my group did.

                            My "relationship" with the Reeve Foundation and with Peter Wilderotter started about a year ago when I lobbed a grenade his direction that started with "you know what I hate about the Reeve Foundation" he was gracious and opened a dialog. Once I moved beyond the spoon-fed hatred of CDRF and started truly investigating for myself, my hatred changed. Now, my only anger is that they SUCK at telling their story.

                            When Lynnifer rails at there being no new scientists in SCI research, I now know that the Reeve Consortium is growing them regularly. When ppl bitch that CDRF doesn't care about about CURE, I can point to Jerry Silver and Aileen Anderson as examples of good stewardship of research dollars.

                            While some are throwing bombs at the PRC, I now know that the CDC grant that pays for that also gets leveraged toward research in a very elegant way.

                            I've never been a fan of the Reeve Foundation or Wilderotter. Until now. I can tell you that if Paolo or Dennis could write a regular cogent piece, I think they could have a voice on the Blog Squad, along with Sam and Kristi and yes, Michael Collins; maybe even me. You may disagree with his POV, hell, if I believed that piece to be authentic, I'd take issue with it.

                            So now my biggest issue with the Reeve Foundation is that they SUCK at telling their own story. I sat in a room with ppl who were as surprised as I was by the promise of the NRN and the Consortium. Folks learning alongside me that Reeve's advocacy efforts were as visionary as they are. That the PRC changes and save lives daily.

                            So, throw bombs, deliberately misinterpret Reeve's mission and motives. I hope they succeed in spite of your malice.
                            My blog: Living Life at Butt Level

                            Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                            "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                            Dawna Markova Author of Open Mind.

                            Comment


                              #15
                              Originally posted by JenJen View Post
                              Thank you! That's exactly how I read Collins' piece. For those calling for Wilderotter's head on an platter, I want to tell a story.

                              I attended W2W and met Sam Maddox. Sam invited me to join his Blog Squad and we've been discussing it since. This is what I learned: each blogger has autonomy and their own voice. There is no Reeve oversight. We each "own" our content for better or worse. No one approved Michael Collins' blog because Reeve believes that everyone has their own story to tell and that should be honored. Sam told me that I will be responsible for my content and my mistakes; no one reviews and approves the blogs.

                              I also had the opportunity to join 3 other wheelers at a meeting at the Reeve Foundation last week. I was suspicious and asked Peter Wilderotter point blank if he directed Sam to invite me to the Blog Squad since I've been such an outspoken critic of CDRF for so long. He had no idea what I was talking about. I sat with Michael Manganiello for two days in discussion of legislative strategy. Again, the breadth of the Reeve vision was astounding. We talked about the strengths and weaknesses of CDRF. The folks there were exceptionally gracious and humble. I was surprised and humbled myself to learn to that some of my more bombastic opinions were completely out of line. This is a WORKING office of individuals dedicated to this cause. I also learned that any wheeler that shows up, gets the same level of attention that my group did.

                              My "relationship" with the Reeve Foundation and with Peter Wilderotter started about a year ago when I lobbed a grenade his direction that started with "you know what I hate about the Reeve Foundation" he was gracious and opened a dialog. Once I moved beyond the spoon-fed hatred of CDRF and started truly investigating for myself, my hatred changed. Now, my only anger is that they SUCK at telling their story.

                              When Lynnifer rails at there being no new scientists in SCI research, I now know that the Reeve Consortium is growing them regularly. When ppl bitch that CDRF doesn't care about about CURE, I can point to Jerry Silver and Aileen Anderson as examples of good stewardship of research dollars.

                              While some are throwing bombs at the PRC, I now know that the CDC grant that pays for that also gets leveraged toward research in a very elegant way.

                              I've never been a fan of the Reeve Foundation or Wilderotter. Until now. I can tell you that if Paolo or Dennis could write a regular cogent piece, I think they could have a voice on the Blog Squad, along with Sam and Kristi and yes, Michael Collins; maybe even me. You may disagree with his POV, hell, if I believed that piece to be authentic, I'd take issue with it.

                              So now my biggest issue with the Reeve Foundation is that they SUCK at telling their own story. I sat in a room with ppl who were as surprised as I was by the promise of the NRN and the Consortium. Folks learning alongside me that Reeve's advocacy efforts were as visionary as they are. That the PRC changes and save lives daily.

                              So, throw bombs, deliberately misinterpret Reeve's mission and motives. I hope they succeed in spite of your malice.
                              Jen, perhaps you missed the rest of that discussion on the evening of Day 1 at W2W. I still remember it vividly and have notes too!

                              The folks there were exceptionally gracious and humble......I also learned that any wheeler that shows up, gets the same level of attention that my group did
                              Perhaps we got them on a bad day
                              Last edited by Fly_Pelican_Fly; 23 Nov 2012, 6:49 PM.

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