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

  1. #11
    Senior Member Tbone57's Avatar
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    Quote Originally Posted by taymas View Post
    EDIT: I've just seen the page... I don't see what the fuss is about. Yes, I'm sick of quality of life mumbo jumbo, and want a cure - but I've got a UTI to deal with, rather than give two shits about an unintentionally dismissive quote on a poster on Facebook lol... Get a grip people, and move on. LOL I saw some BIG "activists" reply to that facebook page.

    Get a grip. Such an unnecessary thread.
    Brick walls are built one stone at a time in this case a word at a time. Don't minimize semantics and vernacular. Communication about what we want needs to be clear and concise A CURE. This poster is bullshit, and the creator of it is an asshole. Its all about a cure and this poster says right on it "its not about a cure".

  2. #12
    Taymas,
    Chill out. No-one is attacking you and I am really sorry if I have made you feel so. Forgive those who have been at it a while longer than you - we forget that it can take a while to get a full picture of what's actually going on. That's not a criticism - everyone I know would admit that they didn't have a fucking clue when they started out looking into cure stuff. I learn stuff everyday about this whole cure thing and hope that you can too. I get that you don't think the wording of the poster is a big deal. You are of course entitled to that opinion. Perhaps you could expand on your reasoning? Are messaging and communication not important?

  3. #13
    Quote Originally Posted by Tbone57 View Post
    Brick walls are built one stone at a time in this case a word at a time. Don't minimize semantics and vernacular. Communication about what we want needs to be clear and concise A CURE. This poster is bullshit, and the creator of it is an asshole. Its all about a cure and this poster says right on it "its not about a cure".
    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

  4. #14
    I tried, people, I tried.

    Taymas,
    Easy there on the personal attacks.

  5. #15
    Quote Originally Posted by Tayberry View Post
    I tried, people, I tried.

    Taymas,
    Easy there on the personal attacks.
    I had not aimed/directed my views at any particular individual here, and I certainly did not attack yourself, simply gave you an example of the SIA that I'm sure you'd be familiar with. And it isn't an attack if it's a factual observation that we do not understand the situation.

    I hope you understand that it is not the responsibility of the SCI BC to provide us a cure, as much as the guys at Rutgers and Dr Wise Young to help me fund a wheelchair or electric bed.

    T

  6. #16
    Quote 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.

  7. #17
    Quote 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

  8. #18
    Quote 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

  9. #19
    Quote 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.

  10. #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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