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    #1

    Care Advocacy is Covered

    Care Advocacy is Covered

    I am dumb founded to a point at trying to understand why more sci people don't advocate for the cure.

    Let's look at who's advocating on behalf of care.

    The ILC industry, each state has at least a few Independent Living Centers, they have employees and board members. Each state has a Vocational Rehabilitation Agencey, board members. Each state has a SCIL State Council for Independent Living. I think that's just a few on state level.

    http://www.ilru.org/html/publication...ory/index.html

    National, NCIL, WID, NOD, NSCIA

    Industry, wheel chair companies, medical supplies, pharma, health care

    Publications, New Mobility, PN/Paraplegia News, ect.

    I know I'm just touching the tip of the ice berg so feel free to add.

    So I can't for the life of me understand the defence of foundations we thought were cure. ie CRF, MP, RHF.

    I mean come on Care Advocacies ass is so covered it's unbelievable.

    If every SCI person injured within the past 2 years went full force on cure, care would not be hurt in any way.

    As a 25 year advocate for care I think we maybe and still do instill a feeling of fear in new sci. A fear that if they don't advocate care they will lose some thing and they won't be living a sci life as it should be according to history.

    It pissed me off for a while when I first heard it but CR said the most true words I've ever heard, he said People are paralyzed because they choose to be.

    Let's move forward and encourage people to do cure advocacy after sci, lets put our funds behind the REAL cure groups, lets get more involved, lets think long and hard on what life should be after a sci.

    Should it be fixing it or surviving it.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."
    Tags: None
    #2
    Originally posted by Leo View Post
    Care Advocacy is Covered

    I am dumb founded to a point at trying to understand why more sci people don't advocate for the cure.

    Let's look at who's advocating on behalf of care.

    The ILC industry, each state has at least a few Independent Living Centers, they have employees and board members. Each state has a Vocational Rehabilitation Agencey, board members. Each state has a SCIL State Council for Independent Living. I think that's just a few on state level.

    http://www.ilru.org/html/publication...ory/index.html

    National, NCIL, WID, NOD, NSCIA

    Industry, wheel chair companies, medical supplies, pharma, health care

    Publications, New Mobility, PN/Paraplegia News, ect.

    I know I'm just touching the tip of the ice berg so feel free to add.

    So I can't for the life of me understand the defence of foundations we thought were cure. ie CRF, MP, RHF.

    I mean come on Care Advocacies ass is so covered it's unbelievable.

    If every SCI person injured within the past 2 years went full force on cure, care would not be hurt in any way.

    As a 25 year advocate for care I think we maybe and still do instill a feeling of fear in new sci. A fear that if they don't advocate care they will lose some thing and they won't be living a sci life as it should be according to history.

    It pissed me off for a while when I first heard it but CR said the most true words I've ever heard, he said People are paralyzed because they choose to be.

    Let's move forward and encourage people to do cure advocacy after sci, lets put our funds behind the REAL cure groups, lets get more involved, lets think long and hard on what life should be after a sci.

    Should it be fixing it or surviving it.
    Lately I have been thinking that the new media, social media in particular have helped more the care advocacy than the cure advocacy..
    Just look at the FB pages of the Reeve Foundation, it's all about celebrating life with SCI and almost nothing about ending SCI.

    New SCI people are more exposed to "cool" things you can do in W/C than how to make a cure happen.

    I have been thinking about doing a counter awarness effort by challenging all the "happy wheelers" messages that are misleading and do not help putting urgency on finding a cure.

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

    Comment

      #3
      Originally posted by Leo View Post

      It pissed me off for a while when I first heard it but CR said the most true words I've ever heard, he said People are paralyzed because they choose to be.
      SERIOUSLY??? That is so offensive. I knew there was a reason I don't read this forum often. UGH!
      Wife of Chad (C4/5 since 1988), mom of a great teenager

      Comment

        #4
        Originally posted by zillazangel View Post
        SERIOUSLY??? That is so offensive. I knew there was a reason I don't read this forum often. UGH!
        Charles Carson - The Early King of a Cure- used to write about people with disabilities having a “Damascus experience” and therefore coming to terms with their new reality. He himself never had such a conversion.

        http://newmobility.com/articleView.cfm?id=11828

        That is why people with SCI give up hope and do not advocate for a cure.

        Zillazangel, what do you do to make a cure happen, if I may ask?

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

        Comment

          #5
          Originally posted by paolocipolla View Post
          Zillazangel, what do you do to make a cure happen, if I may ask?

          Paolo
          No, you may not ask.
          Wife of Chad (C4/5 since 1988), mom of a great teenager

          Comment

            #6
            ......
            In God we trust; all others bring data. - Edwards Deming

            Comment

              #7
              Originally posted by zillazangel View Post
              No, you may not ask.
              That's a bad attitude.

              Are you having a bad day?

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

              Comment

                #8
                Originally posted by zillazangel View Post
                SERIOUSLY??? That is so offensive. I knew there was a reason I don't read this forum often. UGH!
                Paolo is a jerk, so let ME ask ... How are you helping me to walk again?




                Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

                Fenexy: Proyecto Volver a Caminar

                http://www.fenexy.org (soon in english too)

                Comment

                  #9
                  I am doing nothing to help you walk, and don't intend to. I don't have a disease, there is no "cure" for what I have. I have an injury. Ramps, accessible housing, buildings, preventing workplace discrimination help me and others like me now. If stem cells manage to re-wire part of my spinal cord then I will get the joy of becoming an incomplete... an incomplete who will face considerable obstacles that because my body will have wasted away for years as a complete. I am sure you have read the threads about the challenges incompletes face, those threads were a big reality check for me. A situation you will face as well my friend. A "cure" will do no more for me in reality than all the hard work the "care" advocates are doing, and a "cure" is by any realistic measure at least a decade away.

                  So I give my money for care. I don't deride you for you choices, you shouldn't denigrate other people for theirs.

                  Comment

                    #10
                    Yes, Paolo is correct about counterawareness challenging the 'happy roller' mentality.
                    As long as people see us as happy and rolling about living our lives, they will not understand the hell that is paralysis.
                    Leo, I think your thread about a 'high quad' perspective was truly a step in the right direction, but we got to get the message outside of carecure. I've been thinking about this lately, but not exactly sure where to start.
                    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

                      #11
                      Originally posted by t8burst View Post
                      I am doing nothing to help you walk, and don't intend to. I don't have a disease, there is no "cure" for what I have. I have an injury. Ramps, accessible housing, buildings, preventing workplace discrimination help me and others like me now. If stem cells manage to re-wire part of my spinal cord then I will get the joy of becoming an incomplete... an incomplete who will face considerable obstacles that because my body will have wasted away for years as a complete. I am sure you have read the threads about the challenges incompletes face, those threads were a big reality check for me. A situation you will face as well my friend. A "cure" will do no more for me in reality than all the hard work the "care" advocates are doing, and a "cure" is by any realistic measure at least a decade away.

                      So I give my money for care. I don't deride you for you choices, you shouldn't denigrate other people for theirs.
                      But your injury is similar to a disease. The secondary complications combined are terrifying. I think it cure is more about finding ANY treatment to relieve osteoporosis , utis, AD, chronic pain, incontinence etc. Nevermind the fact our life expectancy is significantly decreased.

                      If you had a type of cancer that gave sci symptoms that would progress; would you want research to be conducted?

                      Comment

                        #12
                        I was trying to imagine my life with half of my hands the other day .. no finger extension or gripping, etc and I couldn't even imagine.

                        Signed a lucky para.

                        Everyone should have the RIGHT of independence and that can only be achieved through aggressive advocacy for paralysis treatments.
                        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                        Comment

                          #13
                          Originally posted by lynnifer View Post
                          I was trying to imagine my life with half of my hands the other day .. no finger extension or gripping, etc and I couldn't even imagine.

                          Signed a lucky para.

                          Everyone should have the RIGHT of independence and that can only be achieved through aggressive advocacy for paralysis treatments.
                          On the other hand, I can't imagine living with chronic pain.
                          www.worldonwheels.ca

                          Comment

                            #14
                            Originally posted by christopher View Post
                            On the other hand, I can't imagine living with chronic pain.
                            Then have a doctor sever your spinal cord at c3. You'll feel no chronic pain.

                            Comment

                              #15
                              C6 is far enough thanks.
                              www.worldonwheels.ca

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