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

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  1. #1

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

    A recent poster (https://www.facebook.com/SpinalCordInjuryBC/photos/a.380583922003107.86312.372373222824177/771333489594813/?type=1) put out by SCI BC (Spinal Cord Injury British Columbia) has caused a bit of a stir. While the poster mentions a lot of important facts about spinal cord injury, including letting people know that SCI is more than just 'not walking', it ends with the line which causes the controversy.[/h]
    "It's not about a cure. It's about quality of life."


    I think that many of us in the SCI community have taken this to mean that a cure is not necessary as walking is not the problem. Therefore if you fix the secondary issues, you have created a Good quality of life and forget the walking part.


    Many of us believe that this is kind of logic is crazy. We all agree that secondary complications do reduce quality of life ALONG with not walking AND/OR not being able to use your arms. The difference is that we think cure IS quality of life. Cure paralysis and you cure the many problem that go along with it.


    But before causing an uproar, it would be best to go to the source and ask what this line from the poster actually means. So I've written to Executive Director Chris McBride and Chairperson Edward Milligan and hope to published their response.
    ____________________________
    Dear Messrs McBride and Milligan,
    My name is Dennis Tesolat, a Canadian living in Japan and a paraplegic. I write a blog at www.StemCellsandAtomBombs.org about paralysis cure. The blog is aimed at both educating people about paralysis and cure as well as getting the community involved by giving people a voice in how government, foundations, and other organisations deal with the question of cure.
    Lately I haven't put the work that I should into this project as I've also been dealing with many of the secondary complications you mentioned in your recent poster about SCI. I was happy to see your organisation educating people about these issues. It's very true that when people see those of us with SCI, paraplegics especially, that they think it's all about walking, so it was good to see the poster list off the other forms of torture we live with.
    I also feel that I should let you know that the poster has created a bit of a stir among cure activists. The bottom part carries the line, "It's not about a cure. It's about quality of life." Many have taken this to mean that SCI BC doesn't believe that a cure is necessary, or at least not a priority.
    Therefore I would like to ask you to clarify the meaning of this line and SCI BC's position regarding cure. I personally would like to hear that your organisation's position is that cure IS quality of life and that we have misread your intention, but of course, SCI BC will have its own policy.
    I look forward to receiving and publicising your response.
    Respectfully,
    Dennis Tesolat
    Attached Images Attached Images  
    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

  2. #2
    Haha yeah many spinal cord injuries are T12 as well, this drives me nuts. I think it fails to mention how rare it is to find quadriplegics that live unassisted, but for the ones that do have difficult it is, how expensive and trivial it is to adapt your house. How different (not remotely as good) sex is, how difficult it is to travel with SCI, with a lot more expenses. how much of a pain in the ass it is to transfer in to a car and load your wheelchair. How limited options for sports are, especially for high quadriplegics, and how different they are, and it's not like going to the NHL,NFL, NBA etc or lower tier organizations are an option to make reputation, money, fame or career. Good able-bodied it's not even their top Paralympians don't even make good money. Most of the time children requires the help of a clinic, or some weird tool rare for it to be done naturally. Why doesn't it just say did you know people with spinal cord injury do the following things: have showers, Poop, pee, eat food... talk about skipping the details. That's just focusing and publicizing on the "luckier" percentage of people with spinal cord injury (lower injuries, incompletes etc). What a crock of shit The creator of that needs a punch in the mouth, especially if he's able bodied.

    Depression, urinary tract infection, sexual dysfunction, I feel like I'm the only one to notice this maybe I just have too much integrity, pride and ego To just look past it. but what about the shame from having to ask for things all the time, or the complete lack of freedom and versatility, or what about the utter indignity of bowel care, the disgust that comes with being cleaned and cared for. It's like we just don't want to publicize that part might affect the stages of denial that are encouraged in rehab. Yeah a cure Doesn't matter, let's just become paralyzed make the best of it, publicize the more "Pleasant situations". God for bid we make a fight at it and return to normal, have 100% of what the human body can do. I really wish I didn't read this.
    Last edited by JamesMcM; 10-07-2014 at 02:12 PM.

  3. #3
    Quote Originally Posted by JamesMcM View Post
    Haha yeah many spinal cord injuries are T12 as well, this drives me nuts. I think it fails to mention how rare it is to find quadriplegics that live unassisted, but for the ones that do have difficult it is, how expensive and trivial it is to adapt your house. How different (not remotely as good) sex is, how difficult it is to travel with SCI, with a lot more expenses. how much of a pain in the ass it is to transfer in to a car and load your wheelchair. How limited options for sports are, especially for high quadriplegics, and how different they are, and it's not like going to the NHL,NFL, NBA etc or lower tier organizations are an option to make reputation, money, fame or career. Good able-bodied it's not even their top Paralympians don't even make good money. Most of the time children requires the help of a clinic, or some weird tool rare for it to be done naturally. Why doesn't it just say did you know people with spinal cord injury do the following things: have showers, Poop, pee, eat food... talk about skipping the details. That's just focusing and publicizing on the "luckier" percentage of people with spinal cord injury (lower injuries, incompletes etc). What a crock of shit The creator of that needs a punch in the mouth, especially if he's able bodied.

    Depression, urinary tract infection, sexual dysfunction, I feel like I'm the only one to notice this maybe I just have too much integrity, pride and ego To just look past it. but what about the shame from having to ask for things all the time, or the complete lack of freedom and versatility, or what about the utter indignity of bowel care, the disgust that comes with being cleaned and cared for. It's like we just don't want to publicize that part might affect the stages of denial that are encouraged in rehab. Yeah a cure Doesn't matter, let's just become paralyzed make the best of it, publicize the more "Pleasant situations". God for bid we make a fight at it and return to normal, have 100% of what the human body can do. I really wish I didn't read this.
    Like!

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

  4. #4
    Hi Dennis and James!

    I understand the points you guys have made. However the understanding of the last line can be down to perception of it's meaning - especially since it's a vague attempt at being philosophical by the author(s).

    Here's another perspective of interpretation of it's meaning; that we are not just merely after a cure - we want our quality of life back. In other words a cure won't simply be a cure - it will bring WITH it our quality of life back.)

    See what i did there? I hope I've made sense lol, and I agree it could and should be clarified/altered for those incapable of comprehending the possible meaning behind the quote.

    James, I know how you feel about the lack of information, but there's only so much you can put on a poster.

    Rather than blast the person who made it, it seems silly to disregard his/her efforts. It seems like we're getting into semantics and pointless pedanticism with what it should include. This poster won't necessarily change the global position on SCI cure. It won't lead to mass abandonment of current ongoing SCI cure trials lol...

    And sorry, who are these "cure activist" groups? I'm not able to access the Facebook page at the moment are these self-acclaimed activist?

    Of course I agree that the line was not well thought out, but I imagine it was written in good faith. This doesn't mean to say that the author shouldn't change it, as it may well shape the attitude and stance toward SCI.

    A red herring IMO, people need to look at the bigger picture and intentions behind the poster.

    Regards

  5. #5
    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.

  6. #6
    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.
    Are you from SCI BC? Or just think alike?

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

  7. #7
    Quote Originally Posted by paolocipolla View Post
    Are you from SCI BC? Or just think alike?

    Paolo
    Can you back that claim up? Or just one of the sheeple?

    You know I've been around the forums a while Paolo. I just don't want people getting upset. I've made clear and even criticised the wording of the author of that poster.

    My concern is people making a mountain out of molehills. Absolutely unnecessary. The end goal of the poster seems to be to enlighten people of what we have to suffer. Not to overthrow any trial or cure effort towards SCI.

    T

  8. #8
    Quote Originally Posted by taymas View Post
    Can you back that claim up? Or just one of the sheeple?

    You know I've been around the forums a while Paolo. I just don't want people getting upset. I've made clear and even criticised the wording of the author of that poster.

    My concern is people making a mountain out of molehills. Absolutely unnecessary. The end goal of the poster seems to be to enlighten people of what we have to suffer. Not to overthrow any trial or cure effort towards SCI.

    T
    How long have you been injured?
    How old are you?
    Have you actively partecipated in cure advocay initiatives? If yes which ones?

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

  9. #9
    Taymas,
    You're being incredibly naive, but you're new to the game so I forgive you (but just this once!).

    The statement was not meant in good faith, nor has it been misinterpreted by far more knowledgeable, educated and experienced pro-cure campaigners than you.

    As people in favour of a return of function, we need to be adamant in our messaging: cure is the ultimate way to improve quality of life. It's very fucking much about cure, because real improvement in QofL is dependent on it.

    The idea that paralysis can in any way, shape or form be justified in the 21st century is abhorrent. Any attempt to glorify or applaud paralysis should be challenged at every opportunity. Cure activism, amongst other things, is about creating pro-cure space and part of that is about challenging the status quo. Whether you understand the nuances or not, messaging as put out on that poster keeps us paralysed and in wheelchairs.

    This cure game is not for everyone. If you haven't got the courage to join us, then make your choice and sit it out - but don't troll threads that are not to your liking.

    Dennis - I was thinking we could send them an alternative version and see if they would publish it?

  10. #10
    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".

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