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What does, "It's not about a cure. It's about quality of life." mean?

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    #16
    Originally posted by taymas View Post
    Wise words, and correct... I wouldn't dismiss the intentions behind the organisation though.

    SCI BC: "We help people with SCI adjust, adapt and thrive"

    Honestly this is getting cringe worthy - this is not an organisation for a cure. You wouldn't go to a car dealer and cause uproar for them not selling a sandwich to go with the new tyres.

    See my point now? Get your priorities straight 'cure activists'.

    If charities like this weren't available, much like the SIA in the UK - some SCI folk would struggle. How pathetic is this argument and advocacy for a cure, if you're mad at a CHARITY not providing a CURE?

    If the guys behind the SCI trials said "screw it, let's let 'em adapt" then bloody of course be outraged! Again, it's this issue of common sense and depravation of cognitional ability, that you're going after the wrong people! The organisation's aim as a bloody CHARITY is to help fund for equipment and the like for SCI folk.

    We might as boycott McDonalds for not providing a nice pedicure with that happy meal. There's no logic. Tayberry, we should write to the SIA for helping us fund for a wheelchair or accessibility equipment instead of a cure... See?

    What is wrong with you guys?

    T
    It's not just a charity though. It's an organization that sees and presents itself as the public face of sci. The happy, smiley, "we can do everything normal people do" face. Until a few years ago, it was called BC Paraplegic Association, and while they do a lot of good and necessary work, they are still very much concerned with the public perception of disability. Hence that totally unnecessary statement at the bottom of a supposed "info" sheet. Some members may actually feel that way, especially if they're independent and relatively healthy, but it's just a dumb and presumptuous thing to say about spinal cord injury in general.

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      #17
      Originally posted by Scaper1 View Post
      It's not just a charity though. It's an organization that sees and presents itself as the public face of sci. The happy, smiley, "we can do everything normal people do" face. Until a few years ago, it was called BC Paraplegic Association, and while they do a lot of good and necessary work, they are still very much concerned with the public perception of disability. Hence that totally unnecessary statement at the bottom of a supposed "info" sheet. Some members may actually feel that way, especially if they're independent and relatively healthy, but it's just a dumb and presumptuous thing to say about spinal cord injury in general.
      Scaper,
      That's a very valid point that if they're seen as the face SCI, then they should have thought that last line through, as I've argued throughout this thread, so I couldn't agree more. They should have thought about how the line could affect the person on the other end.

      But my point is to simply clear up what their role as an organisation is, as some of us, as evident by the posts in this thread, are too hostile towards other initiatives, and that if it isn't cure, then let's condemn it.

      Yes, the last line was not sensible since it's affected a few people. We want a cure. But not by inflicting malicious intents to one another.

      Kindest Regards

      Comment


        #18
        Originally posted by taymas View Post
        Tayberry,

        Don't question my courage, and save the overused troll label and the disgusting self-righteous language for yourself. If you can't handle an opinion, understand the POINT I'm making - and more importantly respond maturely, sit out...

        Paolo,
        Save the "what have you done?" response. We both know that you've more experience than I. But have some humility and save the 'high and mighty' BS, as it isn't leaving a very good impression for whatever you're trying to advocate.

        It was never my intention to offend you guys, yet you've successfully tried to turn this debate into a PERSONAL attack, digressing from the subject matter of this thread due to lack of cognitive ability to develop the argument. Save your credibility - what exactly are YOU trying to advocate with your baseless and personal responses?

        T
        I just wanted some elements to better understand your perspective. Never mind, you can keep your opinion.

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

        Comment


          #19
          Originally posted by taymas View Post
          Scaper,
          That's a very valid point that if they're seen as the face SCI, then they should have thought that last line through, as I've argued throughout this thread, so I couldn't agree more. They should have thought about how the line could affect the person on the other end.

          But my point is to simply clear up what their role as an organisation is, as some of us, as evident by the posts in this thread, are too hostile towards other initiatives, and that if it isn't cure, then let's condemn it.

          Yes, the last line was not sensible since it's affected a few people. We want a cure. But not by inflicting malicious intents to one another.

          Kindest Regards
          I'm afraid you might be feeling some of the residual hostility that this forum has experienced in regards to the Rick Hansen Institute, which is, I believe, closely linked to SCI-BC in terms of funding, personnel, and philosophy. The first time I saw that "info sheet" was when the RHI reposted it on Twitter as a "great tool to explain sci". For its part, the RHI is an organization that claims to be cure-oriented, so having them endorse such a blatantly anti-cure statement and attitude, even indirectly, must strike many here as a giant step backward. Me, for one, anyway.

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            #20
            Taymas, any organization even if it's McDonald's, but especially if it is directly related to SCI, that directly states "it's not about a cure" is in the wrong. I understand what they're trying to do and even though I don't see it as important it is a normal noble cause. But there is a proper way to go about it. Making retarded statements like did you know people with spinal cord injury can you still do this, and this, and this and some can do back flips, and run is absolutely ridiculous. Making statements that it's not about a cure is ludicrous. Everything it said about it's not ALL about walking is technically true, things like depression that's a joke, basically irrelevant, UTI s yeah but very small picture compared to osteoporosis, kidney infection, kidney stones, breathing problems, cardiovascular problems etc. Sexual dysfunction yeah but then at the bottom of the page it states did you know people with spinal cord injury have sex, which is not really all that true, some people do what they can but let's get real. This poster gives the impression it's okay we're doing fine, we just need to get get out more. Which is absolute, despicable, deplorable rotten garbage!!! If they want to stay the more advocating for accessibility, adaptive equipment, and offer peer support that's good, some people need. But do it in a tasteful manner, where that is obviously stated, giving real facts about the troubles and difficulties living with spinal cord injury, don't make outrages assumptions and claims like they did. And whether they support cure research or not don't directly shit On it. Just be like the other care focused organizations and don't bring it up, if that's how they want to be. Seriously this organization seems like it's offended at the focus and attention of a cure. It's either run by some ignorant able-bodied person with a few disabled family or friends, or some deeply focused at coping and basically in denial paralyzed person being completely ridiculous, is offended at the thought of people trying to cure (change, FIX) him and is taking it to the next level potentially affecting other people because of his deep fixation at coping. (absolutely disgusting in my opinion). Able-bodied or crippled I'd like to find this guy and level him out, but sadly I'am a high quad that is unable to do most of the things he stated in his poster especially my deeply missed ability to fight and defend.

            Just for the record I agree hand function is crucial, for life lets you interact with the entire world, grip, touch, sensation, dexterity and everything we have was built by the human hand and was intended to be used by the human hand. Bowel, bladder very important, beyond important actually for dignity, self-respect, integrity also for efficiency, productivity and time as well as mental sanity. Sexual function incredibly important. But walking is not this function that is simply disposable, any human being that can just lose its ability to walk and go okay deal that was easy, is a absolute joke.

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              #21
              It's something about that culture up north. Canadians (not all!) tend to be brain washed into liking their disability, or at least complacent with it. They think they are cool. I am embarrassed for them.

              Comment


                #22
                Dear Taymas
                I would like to address a few points in regards to What you have stated.
                1. There is No mountain being made of a molehill. They made their quote and I wrote to ask them What they meant by it and made some guesses at What it could mean. They've been asked to respond and I'll put their response up. You're making it sound like I'm lighting the the torches to get ready to storm the citadel. I've simply asked a question.
                2. In regards to What you call the issue of perception, you could be right about What they meant, but we won't know until we ask. They may even have the same perspective as you do and may appreciate the fact that someone has taken a minute to point out How the quote could be misconstrued.
                3. Tbone was right about How he says walls are built. Words are important because they build How a problem is perceived. We don't want people to get the idea that we're not interested in cure.
                3. Which brings me to the information that scaper gave you. SCIBC is not a simple charity but represents those with SCI and is a membership organisation. You should have checked this fact before preaching How we should leave this care oriented charity alone. This is not the position that SCIBC holds in the public.
                You're right, there is No sense in pushing a cure agenda on an org investment involved only in care. I wouldn't do this, but I would also expect an org like this not to be critical of cure.
                Finally, don't be a smart ass and put cure activists in quotes or use words like Big, tongue in cheek, to describe them. The second you do this, people will start asking you who you are and What you have done to put you in a position to judge others. Personally I prefer the word activist because it does sound more 'active'.

                In the end, the only thing that I have done is to ask a question to a very pubic organisation which represents people with SCI about their public statement. The day that we can't do this for fear of rocking the boat, is the day we should just give up.
                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

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                  #23
                  There will never be a cure. Treatments yes, but a cure won't happen in our life time. 30yrs speaking here.
                  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


                    #24
                    Originally posted by lynnifer View Post
                    There will never be a cure. Treatments yes, but a cure won't happen in our life time. 30yrs speaking here.
                    your opinion is wrong.

                    Comment


                      #25
                      Lynifer,
                      I'm Sorry to say this because I respect you but you cannot say there will never be a cure and base that only on your experience. It would be like someone having lived a thousand years and in 1968 stating that there would never be a moon landing.
                      We need the most experienced like you on the front lines explaining why there hasn't yet been a cure and your ideas on How to achieve one. That's What I would love to hear from you not demoralizing verdicts.
                      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


                        #26
                        Originally posted by lynnifer View Post
                        There will never be a cure. Treatments yes, but a cure won't happen in our life time. 30yrs speaking here.

                        This hurts lynnifer, really hurts...

                        Comment


                          #27
                          Lynifer
                          I'm Sorry to say this because I respect you but you cannot say there will never be a cure and base that only on your experience. It would be like someone having lived a thousand years and in 1968 stating that there would never be a moon landing.
                          We need the most experienced like you on the front lines explaining why there hasn't yet been a cure and your ideas on How to achieve one. That's What I would love to hear from you not demoralizing verdicts.
                          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


                            #28
                            Originally posted by lynnifer View Post
                            There will never be a cure. Treatments yes, but a cure won't happen in our life time. 30yrs speaking here.
                            what is your definition of CURE?

                            Comment


                              #29
                              Originally posted by Nowhere Man View Post
                              It's something about that culture up north. Canadians (not all!) tend to be brain washed into liking their disability, or at least complacent with it. They think they are cool. I am embarrassed for them.
                              SO true!! It literally is, bahaha. A lot of times they think they deserve respect JUST from simple fact they live with a disability, really please.

                              Comment


                                #30
                                Dennis, I will be surprised if they even respond.

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