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

  1. #71
    Quote Originally Posted by Sue Pendleton View Post
    Anyone who has ever done state or lower cure research activism in the US has run into those opposed to a cure. I warned one state leader about this and he thought I was nuts. At the next W2W he let me know he had met the insane who oppose a cure. Yes, they are truly opposed to cures for most disabilities whether congenital or acquired. They do not see themselves as "broken" and so do not need to be "fixed". The absolute worst I ever heard was a Professor at UCLA who did not want polio eradicated because it would eliminate post polio culture.

    I have no problems with the quality of life organizations as long as they stick to their mission. Canada has the highest number of employed disabled people in the world because they try to eliminate barriers. They also have some of the best cure researchers in the world. I do have a problem with those who say they support cure research and fund it but the places that review such charities don't agree nor do previous supporters.

    That poster had their mission stated in the upper left gray box. They should have left it at that and it would raise awareness of the need for funding both sides while being clear about their organizational aims.
    Ha I would love to meet one of these people, we would have an epic argument. The spinal cord is damaged, the connection to the body is literally broken. What a joke.

  2. #72
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by ala View Post
    Out of your suggestions, I like these best. (Blank is too timid.) But I would express them one of these ways:

    Live for today, so we can cure for tomorrow.

    Quality of life. Importance of cure.
    Both are too close to the CDRF's "today's care for tomorrow's cure". Leave it blank.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #73
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    Some people protest far too much about far too little. SCI BC doesn't have to listen to us; they certainly don't have to do what we demand (or request). If they want to have a motto, then they should have one.

    It seems today, there are physical bullies, political bullies, religious bullies, thought bullies, and even word bullies. Who cares what we knuckleheads at CareCure have to say. Remember the old saying that anyone with an asshole also has an opinion.

  4. #74
    Dennis didn't protest or demand anything. He simply asked for clarification and received a great response from Chris McBride. Now there is an opportunity for collaboration.

  5. #75
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    Quote Originally Posted by Jim View Post
    Dennis didn't protest or demand anything. He simply asked for clarification and received a great response from Chris McBride. Now there is an opportunity for collaboration.
    I agree. But others here do protest and demand. They do it all the time, especially on the Cure Forum. They're doing it on this thread. And they recently demeaned a member asking questions about funding and the cure. And they demanded the thread be moved (to what I'm sure they think is the lesser Life Forum).

    A cure may be within our reach. We may see it in our lifetime. But I don't see how blocking out other people methods for living with SCI or their brand of activism serves any purpose other than a selfish fixation upon "cure now!" Sometimes it's as if taking thirty seconds to read something someone else posts is somehow keeping them from seeing the cure. (Which will be posted any time now.) Oh no, we don't want to clutter the Cure Forum or the Media with anything but specific cure information. Everyone has their own damn opinion on what that is.

    Some of us SCI people think sprinkling clouds full of money on SCI research will immediately yield a cure. The cure is there now. Science is just being stubborn. We just need more of everything and we'll have it, for certain. That's not science; that's magical thinking. Money is not pixie dust.

  6. #76
    Preparing for a cure by caring for now.
    Last edited by cripwalk; 10-13-2014 at 08:15 PM.

  7. #77
    I've heard this a fair bit too. I've also heard people say 'even if there was a treatment/cure I probably wouldn't choose to receive it'. I mean wtf!! The same type of person(s) will say that their life wouldn't be what it is today if it wasn't for their sci (perhaps they met their husband/wife through a sci related activity or they excel at a sci related sport) so why change something that has brought them so much joy.

    It really shocks and saddens me to read such things.



    Quote Originally Posted by Sue Pendleton View Post
    Anyone who has ever done state or lower cure research activism in the US has run into those opposed to a cure. I warned one state leader about this and he thought I was nuts. At the next W2W he let me know he had met the insane who oppose a cure. Yes, they are truly opposed to cures for most disabilities whether congenital or acquired. They do not see themselves as "broken" and so do not need to be "fixed". The absolute worst I ever heard was a Professor at UCLA who did not want polio eradicated because it would eliminate post polio culture.

    I have no problems with the quality of life organizations as long as they stick to their mission. Canada has the highest number of employed disabled people in the world because they try to eliminate barriers. They also have some of the best cure researchers in the world. I do have a problem with those who say they support cure research and fund it but the places that review such charities don't agree nor do previous supporters.

    That poster had their mission stated in the upper left gray box. They should have left it at that and it would raise awareness of the need for funding both sides while being clear about their organizational aims.

  8. #78
    I hear it said only when framed with "until I know it would be a safe procedure". Heck if you met your spouse because of where you might have been when you met them I bet they would not divorce and leave you if your regained your muscles, bowel function, bladder function and sexual function. I have heard people of certain faiths express opposition to using embryonic stem cells but not a cure from other means. In 39 years I have yet to hear an SCI individual say the would be opposed to being "cured".

    I have heard people say they would not change being injured but not unwilling to have that damage reversed.

    Quote Originally Posted by scisucks View Post
    I've heard this a fair bit too. I've also heard people say 'even if there was a treatment/cure I probably wouldn't choose to receive it'. I mean wtf!! The same type of person(s) will say that their life wouldn't be what it is today if it wasn't for their sci (perhaps they met their husband/wife through a sci related activity or they excel at a sci related sport) so why change something that has brought them so much joy.

    It really shocks and saddens me to read such things.

  9. #79
    It's turned into a collaboration and it's a good thing. Cure and care should work together, because unfortunately without a cure we need care. You're right everyone has opinions, and for the rest of humanities existence we will argue and fight over them, some with positive results other with negative. There is nothing selfish in wanting a cure now, it will benefit many many people that cannot stand this, and others that can as well. As we speak there is probably someone staring at their pill bottles or a knife contemplating suicide because of paralysis. Not to mention all of the people that will be injured in the future, children for one. They deserve to have a normal childhood and a normal life, not hearing make the best of it, focus on what you can do, it should just be go out and do it because you got it. I have read some of the saddest tearjerking stories caused by people living with paralysis in their attempts to escape it by any means. Just like everyone has opinions, everybody lives with SCI differently, some people can't bear the shame of asking for things, bowel care, being Defenceless etc. others don't think twice about it. Some people are able to still do their passions, other people find a new one, but unfortunately others aren't so lucky, then they have hear just change who you are, how you think, what you enjoy as if they themselves don't know what's going on inside, but after an injury their principles, perspectives etc. are open for interpretation and often judgment. It's horse shit!!

    The Bottom of the poster is ridiculous, many people with spinal cord injury can't do the things that they stated, many people aren't that fortunate whether it's severity, level of injury, pain, osteoporosis, money situation, location, isolation it's to generalized of a statement to make for the general public to read. If we consider promotions like this to be in the care department, un rational statements like this can be harmful. You know how many times I've heard I am not trying, cause I don't use a manual chair or transfer myself or that it's not true that I can't cath myself. While I have the MRI showing a completely crushed spinal cord, a cyst splitting it, I live with the right shoulder that never fits in its socket, the same arm that can't even pronate get even the slightest bit of tricep action. I've spent ridiculous sums of money and effort on physiotherapy with no luck. But wait I've seen an incomplete C-5 transfer , use a manual, cath himself, get dressed etc, so I should be too right? But hey that's just my opinion.
    Last edited by JamesMcM; 10-14-2014 at 09:47 PM.

  10. #80
    Again this is just my opinion, but I strongly believe these people that don't want a cure, or are opposed to a cure were given a relatively quick and safe treatment that returned all functions to normal (The scars of being bound to a chair will remain but can be reversed for the most part) just for a day that's all of the time it would take, their opinionswould drastically change on the matter. given the option to return back to the chair, they'd look at you like you had two heads. Sometimes I think most people have forgotten what it's like to be able bodied.

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