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    #16
    My son Kyle was injured 9/07 is a c6 spinal injury. On the same line as you were saying I get alot of "god, your such a good mom" or " I don't know how you do it" Like theres another option. What kind of mother wouldn't put her child first and do what needed to be done. People used to wonder how I just don't sit around crying all the time. Who has time to cry!!!! I quit my job to stay home with my son and do whatever needs to be done for him. We are new in all this and are learning as we go. I also have 2 other children, very active girls with "extremely busy social lives" So I would like to know when people think I have time to fall apart!!!!!
    My son almost drowned I rejoice in the fact that he is alive and I celebrate all the little things.

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      #17
      Unfortunately, when I was injured in '85, it was common for children with high SCI to be institutionalized and parents had little to do with them. I was fortunate to have parents that didn't agree with that, but I can maybe see some comments coming from that type of older thinking.

      I know one quad, now mid twenties injured at age eight, whose mom is on meds to "handle her son's condition," but it sounded like she had problems before his injury as well.
      C2/3 quad since February 20, 1985.

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        #18
        Originally posted by trainman
        Unfortunately, when I was injured in '85, it was common for children with high SCI to be institutionalized and parents had little to do with them.
        That's heartwrenching.

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          #19
          i'll just post this here because it follows the theme of "dumb questions asked about sci"...i picked up photos at walgreens from a rugby tournament i was just at and the guy asked me "so is everyone in wheelchairs that play?"

          no some of us feel like sitting in chairs all the time while we play sports

          the weirdest question as of yet is if i'm in a wheelchair because of bunyon (sp?) surgery...uhhh

          both these questions were from walgreens staff, something's dumbing down their workers apparantly.
          Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.
          -Dorothy Thompson

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            #20
            I go to clubs a lot with a good friend of mine. Besides the many high fives and "great to see you out!" comments i get, she hears sooo many people say "that's sooo nice of you to hang out with him" - along with many similar comments. WTF? i can mildly entertain the idea of people questioning whether they could be in a relationship w/ me due to their ignorance, but friendship? Stupid Toads.
            .
            "If ya don't have it in the hips, ya better have it in the lips..." ~ Charlie - Villa Dulce

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              #21
              Originally posted by kate
              "What, you don't think he's worth the trouble?" (spoken in a surprised voice, like maybe I missed something they're seeing . . . this one never fails to shame 'em into silence.)
              I get the frustration and annoyance that comes from dealing with ignorance on a regular basis, but acting on your desire to "shame 'em into silence" doesn't do anybody, any good. I've spent a good part of the past 20 yrs trying to educate people, not just shut them up. If you don't choose to spent your time and energy along those lines, OK, but don't make things harder for people with disabilities by punishing ignorance like this. That basically qualifies as encouraging it.

              C.

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                #22
                The comment about "great to see you out" and "that's sooo nice of you to hang out with him" reminds of an incident a few years back: We were out car shopping and as I'm standing there with the sales person, my husband is wheeling toward us. The guy asks me: "Is that your dad?" HUH??? My dad? Matt's six years older than me, clearly not enough of an age difference to make that kind of assumption, I think.

                As for Ashley's rugby comment (I can't figure out how to include quotes in my post ): I used to "play" rugby with the guys all the time. Not in actual games, of course, but plenty of rugby practices. It's sooo much fun!! His other question ... yah, that's it - bunyon surgery. OMG

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                  #23
                  Originally posted by Tiger Racing
                  I get the frustration and annoyance that comes from dealing with ignorance on a regular basis, but acting on your desire to "shame 'em into silence" doesn't do anybody, any good. I've spent a good part of the past 20 yrs trying to educate people, not just shut them up. If you don't choose to spent your time and energy along those lines, OK, but don't make things harder for people with disabilities by punishing ignorance like this. That basically qualifies as encouraging it.

                  C.
                  Well, my thought is that in that little silence people might just come to an understanding all on their own.

                  "You're such a good person."

                  What lies underneath that kind of talk is an assumption that this business of living happily with a person who is disabled by sci must be something so difficult that only "good" people can pull it off.

                  What they're actually saying is, "You're not getting as much out of your marriage as I am out of mine. Your husband is flawed. He can't give back. You are therefore doing this out of pity, which makes you a 'good' person."

                  This is the purest bullshit, as we all know -- but in my experience you don't effectively counter subconscious ignorance like this with a lecture. You try to say something that points the person all on their own toward what is right in front of them. Hence, "Oh, do you think he's not worth the trouble?"

                  That line is about pointing them toward what they actually think without accusing them of it. And yeah, I want them to feel a little pinch of shame--there's nothing wrong with feeling ashamed when you've been a boob.

                  To each his own, though. It's definitely not something any of us are going to fix anytime soon. By the way, if you want to point people at a story that will help to educate people about sci, I wrote one that attempts just that. It's doing very well with people outside the sci community, and the most common reaction I get from readers goes like this: "I'll never see a person in a chair the same way again." Feel free to recommend it!

                  http://www.lulu.com/unbreakable

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                    #24
                    Originally posted by AirForceGirl
                    The comment about "great to see you out" and "that's sooo nice of you to hang out with him" reminds of an incident a few years back: We were out car shopping and as I'm standing there with the sales person, my husband is wheeling toward us. The guy asks me: "Is that your dad?" HUH??? My dad? Matt's six years older than me, clearly not enough of an age difference to make that kind of assumption, I think.

                    As for Ashley's rugby comment (I can't figure out how to include quotes in my post ): I used to "play" rugby with the guys all the time. Not in actual games, of course, but plenty of rugby practices. It's sooo much fun!! His other question ... yah, that's it - bunyon surgery. OMG
                    ooo that's just weird to think he's your dad, the man was seriously confused...i got the opposite in a way once while i was out with my 49 year old uncle as i'm 21. a saleswoman said it's great that my husband takes me shopping! i'm not that old lookinng and he's not exactly a michael j. fox type (the guy never ages) we laughed for a good while on that one. rugby is great, i love the comaderie (spelling again sorry) and the game is addicting.
                    Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.
                    -Dorothy Thompson

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                      #25
                      Originally posted by kate
                      Well, my thought is that in that little silence people might just come to an understanding all on their own.
                      "Shame'em into silence" doesn't indicate any desire to come to an understanding.

                      "You're such a good person."

                      What lies underneath that kind of talk is an assumption that this business of living happily with a person who is disabled by sci must be something so difficult that only "good" people can pull it off.
                      Ya think? That's called ignorance and it's a PITA, but it's generally quite curable. Ignorance is a lack of accurate information. Considering how many posts on this forum are posted by people with disabilities that include some variation of, "SCI sux!" I don't see how you can get too pissy over AB who have never met anyone who uses a wheelchair believing the same thing.

                      What they're actually saying is, "You're not getting as much out of your marriage as I am out of mine. Your husband is flawed. He can't give back. You are therefore doing this out of pity, which makes you a 'good' person."
                      What they're actually saying is that obviously living with a disability carries with it grave difficulties and they believe those difficulties to be more complicated than the average person faces, so choosing to step into that life means you are a better person than they believe themselves to be.

                      in my experience you don't effectively counter subconscious ignorance like this with a lecture.
                      So the choices for you are ridiculing them with one liners or lecturing them? See, I've found any number of other options over the years that have worked to great effect. Also, I find it odd that you would think subtlety (if that is what you are advocating) would be the most effective means of bringing what you believe to be subconscious beliefs to the forefront, and the best way to correct them.

                      You try to say something that points the person all on their own toward what is right in front of them.
                      Aren't we talking about people that don't know you or your husband? So how is what a great guy he is and how his disability doesn't overshadow that "right in front of them"?

                      That line is about pointing them toward what they actually think without accusing them of it.
                      But you ARE accusing them of something. You flat out said that you might say something like, "Oh, do you think he's not worth the trouble?" Which, BTW, I wouldn't necessarily think was so bad if it was followed up with further conversation and not just an uncomfortable silence.

                      And yeah, I want them to feel a little pinch of shame--there's nothing wrong with feeling ashamed when you've been a boob.
                      I would be more ashamed of ridiculing someone who doesn't know any better, than I would be ashamed of discovering I was ignorant of something.

                      To each his own, though. It's definitely not something any of us are going to fix anytime soon.
                      As long as each of us takes the time to do what we can as individuals to end ignorance, then we WILL fix it sometime soon. At least, that attitude had driven my beliefs and actions all my life. Anything less, would only be contributing to the problem.

                      By the way, if you want to point people at a story that will help to educate people about sci, I wrote one that attempts just that.
                      I am aware of your book.

                      the most common reaction I get from readers goes like this: "I'll never see a person in a chair the same way again."
                      I carry my own chair around with me rather frequently. I get that response all the time.

                      C.

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                        #26
                        What they're actually saying is that obviously living with a disability carries with it grave difficulties and they believe those difficulties to be more complicated than the average person faces, so choosing to step into that life means you are a better person than they believe themselves to be.
                        Nah. I think you're hearing this as if it were being said to you. When somebody tells a disabled person they're "good" that might be different. I don't know. I'm not disabled, and I can't tell you what the vibe might be.

                        When they say it to a spouse or partner or sibling or parent or child of a disabled person, I do know what's going on. There's a clear implication that sticking with the relationship, whatever kind it is, requires "goodness." I find that implication mildly insulting to my spouse, because he's no better or worse a man than he was before his injury. I happen to love him a lot, but this doesn't make me "good". It might make me smart, because he's a fairly amazing guy; I'd be dumb not to love him. In order for staying in this relationship to be evidence of my "goodness" you would have to think there's somehow less in it for me than there was before the injury--and that is false.

                        And yeah, I like uncomfortable silences once in a while. The insights people get all on their own (as opposed to the ones that are delivered to them) seem to stick better and go deeper. Just my experience. Maybe I got too many lectures and sermons as a kid or something . . . I don't think they work very well.

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                          #27
                          Whenever I'm out at a music festival kind of deal, where people are drinking all day and get all friendly, I always get high-fives and "good to see you out man" comments. People just don't know what to say.

                          My all time favourite comment (I've mentioned it before) is when an older lady asked me where I was off to when we were both on the train. I explained that I was a lawyer and was heading in to court.

                          "Isn't it nice to see you getting out of the house."

                          Priceless.

                          Chris.
                          Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

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                            #28
                            Another thought that popped in my mind was I had some people say to me at clubs here & there "I don't know how you do it..." and "I don't know if I could do it..." as far as surving life in a chair. These statements didn't offend me much since I clearly remember thinking before my accident I'd rather die than end up paralyzed. I always told these people "You'd be surprised what you could deal with when you have no choice."

                            But one night this guy starts sayin "If I had the same thing happen to me..." - (I look at him expecting the usual comment) - he finishes by sayin "...I'd be rockin the fuc out just like you!!!"

                            I gave the guy a hugggg ~ lol

                            I hope some people in a caregiving or significant other role have the fortune of experiencing a refrshing statement like this every so often.
                            .
                            "If ya don't have it in the hips, ya better have it in the lips..." ~ Charlie - Villa Dulce

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                              #29
                              Originally posted by kate

                              And yeah, I like uncomfortable silences once in a while. The insights people get all on their own (as opposed to the ones that are delivered to them) seem to stick better and go deeper. Just my experience. Maybe I got too many lectures and sermons as a kid or something . . . I don't think they work very well.
                              I hope this isn't the reason ppl aren't talking anymore when I've been out shopping!! They're all now suffering from PTSD when they see a wheelchair.
                              "We're one but we're not the same. We get to carry each other" U2

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                                #30
                                In college I had a girl tell me: "The only thing I wouldn't be able to deal with is not having sex." Well, she's obviously not been around anyone with SCI before ...
                                I didn't really know much about it either - I guess you (we) learn, quickly. Matt says the chair is "nothing" ... it's everything else that comes with the injury. In another post someone had called it "the gift that keeps on giving."
                                Just think, if all people see is the chair and they make comments like that, what would they say if they knew the "rest of the story?"

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