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Thread: Cure and "benefits of disabilty"

  1. #11
    Senior Member Timaru's Avatar
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    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."

  2. #12
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    Quote 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!!!!!!

  3. #13
    Quote Originally Posted by t8burst View Post
    Don't piss down my back and tell me it's raining.
    Liked it.


  4. #14
    Quote 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.

  5. #15
    Quote 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; 11-23-2012 at 06:49 PM.

  6. #16
    This article is horribly written. The author makes these benefits sound like perks. I think that is irresponsible. At the very least, he should retract this piece and provide a new one that clarifies what was wrong with the original.

    Even with Paolo's biases discounted, he was still spot on in pointing this out.
    Last edited by Patton57; 11-23-2012 at 07:18 PM.

  7. #17
    Quote Originally Posted by Timaru View Post
    .....
    Nobody with a disability can take the opening paragraph seriously........
    .....
    I am not so sure as we all know there are many happy rollers around who don't care about a cure just because they feel good as they are...

    Then what about people without disablity? I have lost track of how many AB people (politicians included) I had to explain that we don't just sit, roll around, enjoy playing wheelchair basket etc..

    This blog post fall into the "celebrating life with SCI" attitude that CDRF keeps following, just have a look at their web site or at the FB page to get an idea. I am convinced that this attitude is counter productive when it comes to finding a cure for SCI.

    If everyone thinks living with SCI is fine and dandy, there will be no sense of urgency on the part of those who have the power to help us.

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

  8. #18
    I'll start by saying that this guys post did not capture the sentiments I'm about to express...
    But in my short time with SCI it seems to me the healthiest/most productive/whatever way to live with it (which, in and of itself, is as terrible as everyone here is expressing) is to come to the conclusion that life can go on, life can be good, you can enjoy yourself and overall be happy living with SCI. That is not to say that you should be hapoy about SCI, isolated by itself as a part of your life... But given that none of us knows if and when a viable treatment will come, it's essential, in fact, we try to be happy while waiting. And the support and benefits that come with being disabled is something, GIVEN THE CIRCUMSTANCES, to be thankful for... At least in my own experience, without such benefits, things could be a lot worse.
    BUT...I'm not living with it in a different time period or country...that's a hypothetical as likely as never having been injured in the first place. The reality is as it is... And hopefully the reality can change for the better. It's a balance but to me totally logical that we can at the same time be thankful for what we have and want to change things for the better. You don't have to project being miserable overall to relate the fact that these injuries are themselves terrible things.

  9. #19
    Quote Originally Posted by ay2012 View Post
    I'll start by saying that this guys post did not capture the sentiments I'm about to express...
    But in my short time with SCI it seems to me the healthiest/most productive/whatever way to live with it (which, in and of itself, is as terrible as everyone here is expressing) is to come to the conclusion that life can go on, life can be good, you can enjoy yourself and overall be happy living with SCI. That is not to say that you should be hapoy about SCI, isolated by itself as a part of your life... But given that none of us knows if and when a viable treatment will come, it's essential, in fact, we try to be happy while waiting. And the support and benefits that come with being disabled is something, GIVEN THE CIRCUMSTANCES, to be thankful for... At least in my own experience, without such benefits, things could be a lot worse.
    BUT...I'm not living with it in a different time period or country...that's a hypothetical as likely as never having been injured in the first place. The reality is as it is... And hopefully the reality can change for the better. It's a balance but to me totally logical that we can at the same time be thankful for what we have and want to change things for the better. You don't have to project being miserable overall to relate the fact that these injuries are themselves terrible things.
    Hi, my name is Loredana, I'm paraplegic. already 11 years have past but to be able to do things differently in a wheelchair is not my greatest ambition. I want a cure!!!
    I respect all the point of views but I think is impossible to be happy anyway. All the problems of spinal cord injury make us increasingly anxious and we lose spontaneity. I believe that the concept of happiness is relative, and I think often we don't want to see the concerns of those around us because we have our own. This applies to everyone, but in our case we can not choose not to be worried. we can not never enjoy a single moment of our lives (even more serene).
    for example: we must ensure that our bladder does not make us jokes, that our skin does not burn / sore. we can not really enjoy boyfriend

    We would like but we have no choice. so sometimes we pretend to haven't some problems, because it's embarrasses and causes the pity of people who do not know spinal cord injury. Often we put on a mask to make see only what people want to see (politically correct) because if we talk too much and explain but they can not really understand. Is not their fault, they judge without having all the pieces of the puzzle. we have to really say how things are. Sorry for my bad english. Loredana

    http://curegirls.wordpress.com/2012/...y-is-our-jail/
    Stop waiting for things to happen, Go out and make them happen.

    http://curegirls.wordpress.com/

  10. #20
    I think ultimately we are talking about poor communications strategies. This is not a one-off. It happens time and time again. Communication strategies and being out of touch with the Community were the sole items on the agenda when a group of CareCure members visited Reeve offices in New Jersey in October 2011. So this is not something the board is unaware of.

    If what JenJen says is true ie that guest bloggers have carte blanche when writing articles then you have to seriously ask yourself whether the existing 'Team Reeve' is a good custodian of the Reeve brand. It's a dangerous game. And quite frankly, in an organisation, a significant operational risk.

    @JenJen, can you confirm this is the case or just what Sam told you. Thankyou kindly.

    Although it is off topic, we also know that individual research grants are now off the menu at CDRF. So if your lab is not part of the Consortium you dont have a hope in hell of getting funding for your project - no matter how promising it may be. So yes, they are growing scientists, but only within their consortium. This strategy is the polar opposite of Wings4Life and ISRT who fund projects across the globe on the merit of the grant application rather than the geography and labels.

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