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

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    #61
    " However, we think it is important to reflect the fact that people with SCI have broad ranges of priorities and that not all feel they need to be cured to have a quality of life – that one doesn’t need to be cured to be whole. We know this based on what so many of our members tell us and from some very interesting research that affirms it." That was either a bias test group, or he's blowing smoke out his ass because every single statistic I've seen is usually split 50-50, with one here and there just barely tipping to one side or the other. Not to mentation just being disabled, and personal experience with reading people's blogs, posts and talking to people in person.

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      #62
      "we need to respond to the those who are not engaging in their communities or working to maximize their potentials because they are waiting for a cure"

      How many are these people in %? I think very few, but it would be intereting to ask SCI BC if they have a figure.

      I think most of the people who are not engaging in their communities do so because of the limitations related with SCI. Even if we could eliminate all complications induced by SCI we would still have all SCI limitations.
      Let's just think at the callenges related to traveling especially for high quads.. at best they can be mitigated a bit, but still would prevent people from traveling in most cases.

      The best thing SCI BC could do for people not engaging in their communities because they are waiting for a cure is to engage them in activism to make a cure happen ASAP.

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

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        #63
        "..and that it would be a great disservice to people with SCI if all of the money was diverted to efforts towards a cure.."

        I think no cure activist would want all the money diverted toward a cure since we all need care, just a spending review is very necessary IMO, starting from what is spent already for SCI research.

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

        Comment


          #64
          Originally posted by tomsonite View Post
          PS I'll bet my car that 99% of the AB population that doesn't have some personal connection to SCI does not realize that SCI is more than just not walking. Almost every single person thinks that if you injure your spinal cord, you can't move and use a wheelchair to get around, and that is all that you deal with. Last year, Travis Roy gave the keynote speech at W2W in which he gave very detailed descriptions on everything that life with SCI entails. It was devastating to me when he requested his full speech not be made available to the public.
          Might he be persuaded to publish this speech now? Why would he not want his message heard by those who were not at the event?

          Comment


            #65
            Yes. Paolo's two points above are excellent, especially about engaging people in activism. These are the two points which I wanted to tackle in my next blog post.
            I do understand Mr. McBride's fear, that people end up doing nothing but wait for cure, but I don't know if it really has a basis other than fear.
            The way you keep people with SCI active and not just sitting around waiting is to engage them in activity which will change their lives, and that is cure. In my mind there is no difference between this and organizing the poor, or workers, or any other kind of group who are suffering from some kind of oppression. We know that leaving someone just waiting to be delivered from poverty or waiting wanting a pay raise will just leave them depressed because nothing will happen. So you need to engage people to fight for their own freedom. This is the exact same thing as disabled activists have done in the past to fight for their rights.

            Now, how can this be translated to an org like SCI BC which has a diverse membership with different view points, needs, and wants. Well, this is just one idea. Set up a Cure Club. Invite those with SCI who are interested to come to weekly seminars about their spinal cords, the problems of regeneration, what is going on in terms of cure, etc. Go on field trips to labs (all very engaging stuff), but most of all lead discussions on how they themselves can become involved. It's just like teaching, to be effective it has to be both instructional and engaging. Educate and inspire. One simple idea and in only one paragraph.
            Now the big question we're always asked; if you think it's such a good idea, why don't you do it yourself?
            Well, I guess I do sort of do it myself, but I only have a soapbox while the other bigger and more well established organisation have a world stage. Much more effective to help them set this stuff up than starting from scratch to set up yet another organisation.

            I'm going to make one final point and since I know Mr. McBride is following this conversation, I want to point out that I am not talking about him.

            There was a side conversation in this thread about being opposed to cure. Some have pointed out that they haven't met anyone who says explicitly that they are opposed to cure. Thank God I haven't met anyone like this either, but I think this metre stick for measuring opposition is not enough. Arguing that a cure will never happen (or not for a hundred years) and therefore arguing for not spending resources and/or not educating people with SCI about cure, is no different than being opposed. Of course no crazy is going to say they're against cure, or peace or ending poverty for that matter, but in my opinion if you don't believe it's possible and refuse the resources which are fundamental to achieving the goal, what's the difference even if you don't verbalize the opposition.

            I hope we can keep this thread going and give ideas to Mr. McBride and others about how bigger, more well established organisations can be concretely involved in cure while still fulfilling their mandate to improve care and quality of life.
            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


              #66
              As part of the acute rehabilitation several organizations educate their clients on their rights under the ADA, research efforts and how to advocate for their interests for BOTH care and cure.

              There is an interesting conference at Emory University next year trying to push issues to a much larger audience.
              http://news.web.emory.edu/stories/20...nce/index.html
              Originally posted by StemCells&AtomBombs View Post
              There was a side conversation in this thread about being opposed to cure. Some have pointed out that they haven't met anyone who says explicitly that they are opposed to cure. Thank God I haven't met anyone like this either, but I think this metre stick for measuring opposition is not enough. Arguing that a cure will never happen (or not for a hundred years) and therefore arguing for not spending resources and/or not educating people with SCI about cure, is no different than being opposed. Of course no crazy is going to say they're against cure, or peace or ending poverty for that matter, but in my opinion if you don't believe it's possible and refuse the resources which are fundamental to achieving the goal, what's the difference even if you don't verbalize the opposition.

              I hope we can keep this thread going and give ideas to Mr. McBride and others about how bigger, more well established organisations can be concretely involved in cure while still fulfilling their mandate to improve care and quality of life.
              Last edited by c473s; 13 Oct 2014, 10:32 AM. Reason: fat fingered spelling errors.

              Comment


                #67
                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.
                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.

                Comment


                  #68
                  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.
                  Ahhh...there will always be the criminally insane around.

                  I do think your idea on the poster is a good one. They have all the information on the poster that it needed anyway. They just need to eliminate the small blue box at the bottom right hand corner since it detracted from the poster data anyway. They shouldn't have tried to fill that small space on the poster and left it as it was.
                  http://spinalcordresearchandadvocacy.wordpress.com/

                  Comment


                    #69
                    I have gotten a few suggestions by email and one of them was also to leave it out completely.
                    I prefer to have a statement of purpose, but would prefer nothing over the current one.

                    Here are some of the ideas I've gotten so far and have left out a few that are either anti-care, anti-QoL, or anti-cure.
                    Anymore ideas, send them along.

                    Leave it blank.

                    Improving quality of life. Preparing for future cures.

                    Future therapies need improved quality of life now.

                    It's about cure and quality of life.

                    Prepare for the ultimate quality of life. Paralysis cure.

                    Getting ready for the cures of tomorrow, by improving quality of life today.
                    Last edited by StemCells&AtomBombs; 13 Oct 2014, 3:35 AM. Reason: spelling
                    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


                      #70
                      Originally posted by StemCells&AtomBombs View Post
                      Improving quality of life. Preparing for future cures.

                      Getting ready for the cures of tomorrow, by improving quality of life today.
                      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.

                      Comment


                        #71
                        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.

                        Comment


                          #72
                          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.

                          Comment


                            #73
                            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.

                            Comment


                              #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.

                              Comment


                                #75
                                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.

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