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Thread: How do you respond?

  1. #21
    Marie,
    Having answered that question oh maybe a billion times..it actually gets boring.

    In the early days just to say you had polio
    made people step back and run from you.
    So I guess we developed a reluctance to share this with anyone.

    I have even said I washed my legs and can't do a thing with them.

    With children I will just tell them it's something they get shots for so they don't get it.

    With adults will say just about anything to
    change the subject..even do my version of
    a woodpecker just for fun.

    But, with the importance of the research now
    for SCI..you should use the situation to educate the inquiring public.

    I've even had some ask me if I think the research will help what I have..I tell them
    most likely not, but even if it's not directed towards you or me..it is important
    to help make it possible for others.

    I guess the best way of dealing with it is
    to just answer according to the situation.
    Find what works for you emotionally.

    Inside of every older person,
    is a young person saying, "What the hell happened?"

  2. #22
    I personally prefer to have someone who is curious to be direct with me and ask, rather than continue wondering _"what's wrong with that person"_, awkwardly sneak glances at me. To have others continue their misconceptions of people with disabilities and allow their lack of understanding to shape their understanding of those who live with varying disabilities and subsequent treatment them, does more harm than my simply taking a moment or two to tell them just as directly and matter of factly why I am in a chair. Most adult strangers are not going to walk up to you, ask you why you're in a chair and then walk away (tho I've had children do that, which I actually love when they do). If you've engaged them in some conversation/interaction, however superficial, you are imparting on them a greater awareness and (hopefully) understanding of people who are in chairs through their brief experience with you.

    Whether we like it or not, I believe that we as individuals have the unsolicited burden of representing people with disabilities as a whole. You can use that as a responsibility to effect some change, even if just through those fleeting human connections made, or not.

    It can be triresome and plain annoying sometimes, but it's just a part of the burden of being in a chair. How we respond to others will inevitably reflect back on how they respond to us (and not just on an individual basis, but on a socio-political spectrum- including attitudes and consequent policies toward cure)
    I have to totally agree.... We have to be matter of fact and generally up beat to the public about this. These are the same people that we will ask to pass legislation on things that are favorable to the "CURE". If you are not comfortable about it how can they be?
    My wife is constantly bombarded with people telling her how their life is a wreck... it goes to show you it is all perspective, my wife has it so together in so many areas that others don't!

    "Those who would trade liberty for safety deserve neither." - Ben Franklin

  3. #23
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    I don't mind the questions; I am very matter of fact about what happened and how fortunate we have been. It is the unwanted sympathy that I can't handle--well I can but I don't like it. I agree with the sentiment that we are ambassadors for a cure and for those who come after us. In fact, that is one reason Ken and I are going to do the graduation walk at our age. I think we need to shake up American stereotypes. We aren't pretty and young but we did the time-wait that should read the work-so we should be represented with the other grads! And there are so many people out there at different stages of SCI and different life stages as well. But, having said that, the sympathy part I don't like is that it sometimes comes from a framework that views what society calls "normal" as the only basis for a satisfied, well-lived life. I am sorry this sounds rough and I don't communicate well; my philosophy is a work in progress

    "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

    [This message was edited by Marie2 on 05-25-04 at 07:03 PM.]

  4. #24
    My partner has been in a chair for about 35 years now. We've been together for almost ten. She'd handled the questions so long I took my cues from her as to how to deal with them - especially since people seem to want to ask me - the A/B - instead of her. What - do they think she'll bite? Generally, we've come up with a very abbreviated version of the really complex whole story as to what happened. If they want more info, no problem. My partner figures that people will never learn if nobody educates them, so as long as she's approached with sincerity she'll answer anything. She has a knack with people, and usually it only takes a minute before she has them laughing with her and they seem to stop noticing she's in a chair. I"m trying to learn to be more like her. She doesn't appreciate the people who simply stare - drives her nuts - and rude people get what's coming to them. There are limits to her willingness to share. With children, she came up with a cute way of making them comfortable. She's in a Jazzy, and she took a bungee cord, strapped it across the back of the chair. and started hanging those cute little keychains with various animals or cartoon characters on them. Kids love them and it puts them at ease immediately. If people say "I"m sorry" she says something along the lines of "oh honey (everyone's honey, dear, darling ) , don't be. I learned a long time ago that feeling sorry for myself doesn't change a thing, and I enjoy everything I can do instead of what I can't". Of course, it's hard to always keep that attitude when you're in constant pain and always fatigued, but she does her best to practice what she preaches. Her number one pet peeve? Anything inaccessible - she used to work as a free-lance consultant to businesses teaching them how to make their places truly accessible. She still fights, to the best of her ability given her current health status, for the rights of the disabled to have access everywhere.
    Can you tell I am very proud and feel very lucky to have this woman as my mate?

  5. #25
    Senior Member teesieme's Avatar
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    Originally posted by Kendell:

    Can you tell I am very proud and feel very lucky to have this woman as my mate?

  6. #26
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    What I dislike even more than the unwanted sympathy is the unwanted looks I get when I'm just being me! Ray and I have our own way of communicating and to some, it may sound like we do not get along. But, it's just the way we talk to each other. It's kind of our own twisted way of flirting. But, because he is in a chair, sometimes people will over hear us and look at me like I'm Super Bitch! Like how dare you talk to that paralyzed man that way?! I'm not assuming what they are thinking either..it's all over their faces. Well, I can't and am not going to try to adapt my communication with my husband to please the world, so I just have to live with it. Funny thing is, no one ever looks at HIM like he's a bitch when he is just as "guilty" of this rough talk as I am! I've even made a joke to people before about him, just to rib him, and had people say..."oh don't talk about HIM that way!"....no one ever says this when he ribs ME!

    Even though it's not an uncommon occurrence for us, along with the unwanted sympathy, both take me off guard every time still. I'm just not ready for it, because I see us as any normal couple, because we are. We just have different things to deal with than some couples. Ironically though, sometimes I find it's other disabled people who seem to dwell on our differences more than anyone else...as if we must "embrace our difference from other couples and rise above it". We aren't in denial. We are well aware of his SCI. It's just not an issue in our relationship. It's just life. So, when the unwanted sympathy or dirty looks at moi start, it's just kind of a twilight zone feeling.

  7. #27
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    That is so true--and when I don't hop to the first second after my husband askes for something I get the look and huff. Boy that is a nerve for me. It seems like we are held to a different standard than folks in ab relationships. I see us the same way you do--two people in a relationship. No better no worse off than anyone else.

    "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

  8. #28
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    Oh I'd forgotten about the "you didn't hop to fast enough" look and huff! You are right we are held to different standards as AB spouse's AND as couples. Higher standards than anyone else. I guess Ray and I will never meet the world's expectations, since I was born a bitch, and he was born a big, mean redneck!

  9. #29
    Senior Member kate's Avatar
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    Originally posted by X:

    I was born a bitch
    LOL, X! I want a bumper sticker that says that.

  10. #30
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    Kate if I see one somewhere I'll get us both one!

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