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Thread: Has anyone studied how attitudes of high-profile SCI people effect newly injured?

  1. #1

    Has anyone studied how attitudes of high-profile SCI people effect newly injured?

    Has any study been done on how high profile-SCI individuals and their public attitudes towards recovery and a cure affect the rehab and attitudes of the newly injured? I often wonder if the public stance of some of the rehab centers and individuals like the late Christopher Reeves or Eric LeGrand, that a cure is imminent, while necessary to secure research dollars and media attention, might have a negative effect on the newly injured.

    I remember when I was injured (C6) 10 years ago, many felt that a cure would be 10 years away. 10 years before that, shortly after Christopher Reeve was injured, he stated the same thing. I'd be interested in knowing if putting that message out there, while inspiring, gives people false hope and has a detrimental effect on reaching a point of acceptance. I also wonder if making walking synonymous with recovery will only lead patients who don't regain the ability to walk, despite making great progress, to see themselves as having failed. I never regained the ability to walk, but I consider my journey from my injury to this point as the greatest thing I've ever accomplished. If, 10 years ago, I saw myself as I am now, I'd have thought of myself as a failure. There are many different types of recovery between disability and walking. I fear that these types of recovery aren't being promoted enough.

  2. #2
    Someone get this verbal diarrhea out of the CURE forum. Please.

  3. #3
    Senior Member pfcs49's Avatar
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    sounds sensible to me. calling it verbal diarrhea sounds like shit to me. Besides being unnecessary and discourteous.
    It certainly seems pertinent in the (sacred cow?) CURE discussions.

  4. #4
    It has nothing to do with the attitudes of the high profile people. I am glad it draws attention though. The media have ignored the stories of us lesser mortals for decades.

  5. #5
    I think this has really nothing to do with the cure forum..
    In God we trust; all others bring data. - Edwards Deming

  6. #6
    Unless we fund a study on it for research... Maybe the NIH will!

  7. #7
    I looked for a forum on research studies, but there weren't any, so this seemed like the next closest thing, since my post had a lot to do with how people approach finding a cure. I really wish that somebody would do a study on how the media affects people's attitudes on recovery. It always seems black and white in the media, you're either disabled and in a wheelchair, or walking and able-bodied. There is little discussion about the in between. There is groundbreaking work in nerve transfers, which have the potential to give grasps back to tens of thousands of C5 - C7 patients, but is hardly a mentioned in the media. There's little talk about preventing infection, so that if there is a cure, people live long enough to get it without dying of an infection. When I was injured, despite not being able to use my hands, all I wanted to focus on in rehab was walking. That's crazy when you think about it, but there's a reason, and I feel that it's because the media pounds into the public that recovery equals walking, and that a decent life can't be lived in a wheelchair. The very suggestion was apparently so repulsive to someone here, that they referred to it as verbal diarrhea.

  8. #8
    Quote Originally Posted by JCampbell View Post
    I looked for a forum on research studies, but there weren't any, so this seemed like the next closest thing, since my post had a lot to do with how people approach finding a cure. I really wish that somebody would do a study on how the media affects people's attitudes on recovery. It always seems black and white in the media, you're either disabled and in a wheelchair, or walking and able-bodied. There is little discussion about the in between. There is groundbreaking work in nerve transfers, which have the potential to give grasps back to tens of thousands of C5 - C7 patients, but is hardly a mentioned in the media. There's little talk about preventing infection, so that if there is a cure, people live long enough to get it without dying of an infection. When I was injured, despite not being able to use my hands, all I wanted to focus on in rehab was walking. That's crazy when you think about it, but there's a reason, and I feel that it's because the media pounds into the public that recovery equals walking, and that a decent life can't be lived in a wheelchair. The very suggestion was apparently so repulsive to someone here, that they referred to it as verbal diarrhea.
    You shouldn't be surprised that in the cure forum "The very suggestion was apparently so repulsive to someone here, that they referred to it as verbal diarrhea"

    I am happy you seem to have adjusted to your SCI life in a Stockholm Syndorme fashon, unfortunatly the opposite is happaning with me year after year.

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

  9. #9
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    Wow, it still amazes me how testy some people here at CareCure can be about the subjects of Care and Cure. Not everyone shares your specific opinions. And not everyone writes like an English PhD. We are a community. I think the OP has asked some valid questions and has shared some concerns regarding the subject of cure and how it is perceived by the Media, funding and research sources, the general public, and those of us unlucky enough to be in the SCI club. While I find myself at times reacting peevishly to things said by people here, I still recognize their right to say them.

    By the way, one of my pet peeves is people who find the need to correct everyone else's writing skills, like grammar and spelling. If you really have the need to "grade papers," try volunteering as a teacher's assistant at your local school. That's were your skills are needed. You add nothing to the discussion here.
    Last edited by ala; 09-27-2014 at 08:52 PM. Reason: grammar and spelling...hey, I can correct my own!

  10. #10
    I think many define cure differently Paolo. Some in spiritual terms and other only as complete 100% return to the physical state they enjoyed before injury or disease. Some here are more tolerant of the opinions of others or simply choose not to respond. When we shut opinions out we lose another voice we need screaming for visibility, funding and input into how funds are spent.

    Quote Originally Posted by paolocipolla View Post
    You shouldn't be surprised that in the cure forum "The very suggestion was apparently so repulsive to someone here, that they referred to it as verbal diarrhea"

    I am happy you seem to have adjusted to your SCI life in a Stockholm Syndorme fashon, unfortunatly the opposite is happaning with me year after year.

    Paolo

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