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    Dealing with John Q Public

    There, I've given him a name! This is a continuation from the turn the "too stubborn for my own good' topic took.

    John Q - is he demented? Uncaring? Uncomfortable? Uneducated?

    And what about the comments we've all had from health care pros, who are 'supposed' to know? Like, oh, I'm sorry - did that hurt? From an aide of ours who lasted three days! Or people (this is the one that frys me!) who talk to me when asking a question of my son - like he's incapable of answering!

    Do we just chalk it up to ignorance, make a snappy comment and go on, or carry little 'living with SCI' pamphlets to pass out? What are some of your responses?

    _____________
    Tough times don't last - tough people do.
    _____________

    #2
    CREATE SIGNS FOR SOME

    GOOD FORM, (FOR ME)
    I have good friends from school, since school I have own my own business for like 20 years and I hate people sometimes (NOT really Hate)
    but I have seen friends School & professional that see me and i see their eyes looking at me and just not even say HI? Or what or how or how's your mom?)*&^%
    I PLACE UNEDUCATED HERE

    And people look at my legs like I shouldn't wear shorts Cuz i wear these UGLY braces to balance me but I dun't give a S_it and i have gotten kinda crazy when i see people looking out of the corner of their eye I look and say HI ! although one day I was at SAMS and this man was talking to me and his little girl was looking at me and looking at my legs and could not stop and she had to say it " Daddy look at her legs"! he handled it like a pro yes, shes got legs, and went on with our conversation. I was so happy cuz well you know why and I just about hugged him.

    Health care pro's what ever they call themselves professionals but I belive professionals would be more educated and empathetic or at least not offer their opinions just listen and tell what they see in the films or your body.To the doctors that say YOU don't have pain or deal with your pain or I don't want to hear about your pain having, what I got to say to them well part of it I don't think ya can post here but what I can say is..
    I would love for one of them to be around when I'm having these "fits " as I call them.
    Sometimes I have to go to the hospital it gets this bad, often and I see a doctor who is explaining to me why they can't give me medication and then i get one of these shocks and I scream and I look at them like, get a little closer and see what happens to you.
    I get real loud when its this bad ...well then they have nota problem and give ma a shot or a prescription and both. Its amazing how their mind changes in a split second, once they experience a little of my PAIN in real life. I use to bite on a towel trying to camouflage what I'm going through but I have gotten a little ? I don't know the label for it but I'm real tired of doctors telling me what my pain is or is not and that it is not as bad as i experience and when this doctor i seen last compared my pain to a cheerleaders broken pinky and she passed out from it I realized my feeling that I'm thinking is well ....
    As for as these people they are in need of these little SCI pamphlets because they have to be educated on pain cuz they have never experienced it and obviously can't understand anything unless they experience the problem we have to educate them for the next person, for I wont be back, and also they must wear a sign until they display understanding and think that all persons experiencing pain is not junkies from the 60's needing a fix. If they were worried about this they could ask out medicine history like in the last 10 years. I could had put in the last 40 years I have never taken even a Tylenol for a headache I worked it out , when I cut my finger off and left the hospital I was given a pain prescription threw it away. This is a whole different pain !!!! But these very educated professionals they can't think of this as an alternative to ignorance.
    So there that's is my real big problem. Snappy comments this goes a far way for me!This is what frys me!
    hope all this goes here. [img]/forum/images/smilies/wink.gif[/img]

    Comment


      #3
      Well, Jackie, the public--by which I mean strangers, people in stores and malls nd on the street--are just annoying, ignorant, and thoughtless. Kind of like me on many other issues, I'm sure! I can deal with them fine, and only the really stupid ones make me angry.

      My problem is some of my own friends, neighbors, church acquaintances, the people who generously took care of us in every way they knew how during the first months of crisis, and still would do whatever I asked them to do. It gets under my skin when:

      our family becomes the symbol of something they want to believe in (God chose to answer their specific prayers on our behalf.)

      our family becomes the symbol of something they desperately fear (They are not safe, their loved ones are not safe, life is dangerous.)

      our family becomes the symbol of courage and determination (Maybe deeply admiring us saves them the effort of confronting their own varieties of "paralysis"?)

      our family becomes the focus of resentment (We get so much attention and caring from the community, and they don't.)

      In short, our family has morphed into a kind of mirror, or target, or sponge for what people need to see (or expect to see) when we come into the room. In a very strange way, our spectacular tragedy has made us, like, INVISIBLE!

      The people who simply see us as ourselves are amazingly rare--and thank God that group includes almost everyone in our immediate families, plus a solid little core of decent, decent people. I can tell when I'm with someone who isn't projecting their own stuff onto me by how relaxed I am with them, and it's HARD when I feel like I have to wear emotional armor in my own church! That's why I was so frustrated on Sunday afternoon.

      Kate

      Comment


        #4
        Kate, How eloquently said! And you're right about 'sensing' how folks are feeling when they're around.

        Don't know what your church situation is, but have you thought of speaking maybe to the women's group (if there is one) at the church, in an educational, informative way? That this is your life, this is how it's different, this is how it's the same, this is what a 'day in the life' is all about. That you're not asking for sympathy, you're only asking to be treated as any other member of the parish?

        You hit on two of my pet peeves; folks who turn our situation into a religious crusade; I get so tired of hearing that god has a plan or trust in god; I did trust in god and if I believe that doctrine, he must have been looking the other way when the car my son was in swerved off the road. I know people mean well, but I never have and never will enjoy someone who feels theirs is the 'only way' and telling me I must believe.

        And my other major beef is with people who tell hubbie and I how courageous we are??!!! What wonderful support we've given Matt, ya da ya da. We're only doing what families should do; we're not courageous or strong or any of those things. We're just a family.

        I still believe that educating ole John Q. is going to be the only way that people with any disability and their families are going to be accepted into everyday society without so much as an eye blink. The more mainstreaming of kids with disabilities there is, the more kids get exposed to someone in a chair, is what's going to make changes.

        We have to remember that until very, very recently, DA'd were shut away in 'homes'. It was only after the Viet Nam war that we even started seeing guys in chairs out in public. With the passage of the ADA, and more accessibility, I do believe things are changing - albeit slowly, but they are changing! The kids are the hope of the future in being able to accept differences of all types - color, race, religion, politics, or wheelchairs.

        _____________
        Tough times don't last - tough people do.
        _____________

        Comment


          #5
          Just switched over to the 'Life' forum and caught this post - most relevant!:

          http://carecure.org/forum/showthread.php?t=30793

          _____________
          Tough times don't last - tough people do.
          _____________

          Comment


            #6
            My husband and I have learned so much about ourselves and others after SCI entered our lives. It has been an emotional roller coaster. Whenever we are with a group of friends, a congregation, or amongst strangers we are confronted with such a mix of reactions that it is at times exhausting. For every thoughtful gesture, empathetic hug and practical assists there are thoughtless, hypocritical responses and countless roadblocks. We simply never know what we will encounter.

            By unspoken agreement we have focused on the incredible outpouring of love and support of our friends, school and church communities, new acquaintances and complete strangers. Most cannot comprehend what our lives are like and openly admit that they have no idea how to help, but they want to. We have had to learn how to ask. Now that is very difficult when you are accustomed to taking care of yourself and others.

            We too have heard every cliche (the one that makes me most crazy is that God never gives us more burden than we can bear). Hmmph! Lay off already, I'm toast! Likewise I do recognize that this is for some people the only way they know how to express that they care and I am grateful. You know, my way of expressing comfort may not be so comfortable for everyone, but I too do the best I can.

            We moved into our newly constructed fully accessible home 3 months ago. Hurray! (that is another story). Our new neighborhood is blessed with 77 children of which our college and high school age children are second and third oldest. For reasons we do not fully comprehend our two dogs have become very popular and the children enjoy walking and playing with them. They have also learned how to feed, water and kennel them. After thay have finished they often stay to visit. We have answered countless questions about what happened to my husband as the children race around on wheelchairs and hop aound on his walker. The stairlift will be a huge hit when we install it to the basement.
            A new development since the children have returned to school is the introduction of their school friends. They introduce the dogs first and explain their temperment, then me, as their friend and finally my husband, as Mr. D. They are very matter of fact when explaining that he is paralized. I think it is merely to explain all the equipment. When we met all their parents at the block party most expressed concern that their children were bothering us. In addition to reaasuring them that this was not the case I wanted to make sure they were comfortable with their children visiting us. It seems that we are all delighted with the current arrangement. The point I am trying to make is how natural the children are and how we are trying to make them comfortable with the differences in our life.

            Make no mistake, we are not always positive, not always accepting, not always understanding, but we do appreciate and accept the gifts that come our way. it takes so much energy and an amazing amount of time to fight the good fight. I wish I had more time to advocate for all of us, cause we sure need advocates. Perhaps someday that will be my role, but for today, well, I just need to get through it the best way I can. I am so grateful to all of you! This Forum has been a lifeline for me. Noone understands like you. I have learned so much and trust in all you share with me. Thank You! Kath
            Kath

            Comment


              #7
              Dear Kate

              You are so perceptive and write very beautifully describing what many of us feel, but were unable to express. We are fast approaching our 3 year anniversary of my husbands injury. Yet it seems like yesterday that I was one of those persons trying so hard to understand what it must be like to live with a disability. For 8 straight years I tried to help elementary age children understand what it is like to live with a disability through the Everybody Counts Program. At the same time I was attempting to empathize with those who came to speak to our need to understand. It doesn't seem to matter much how hard you try... until you walk the walk or try on those shoes it may well be impossible to truly understand. We all must remember that so we do not suffer too much in the aftermath of ignorance of what heretofore none of us could possibly understand.
              Kath

              Comment


                #8
                I'm not enthusiastic about the Everybody Counts program. My neice (7 or 8 years old at the time) informed me that they old her, "Everybody counts, EVEN IF they're handicapped." Although I'm sure the program didn't intend the message to be taken this way, it actually gave her the impression that handicapped people are second-class.

                I tried to explain that a handicap is just a characteristic. She has brown eyes. I can't walk. They are both just characteristics that don't change who you really are.

                The Everybody Counts program seemed to emphasize the differences between people rather than the similarities. Perhaps we should examine how adults act toward handicapped peple as a result of what we, as a society, teach them as children. Like the saying goes, "They learn it somewhere." We obvously aren't teaching the right things.

                Comment


                  #9
                  We Are Different

                  RTR, we are different. No matter how you may wish it is not so, we are different. Our bodies no longer function as they were intended to. We no longer look the same. We cannot function in this world the same way we used to or rather as others do. What is so wrong about pointing out our differences and then learning to accept them?
                  Kath

                  Comment


                    #10
                    Marmalady

                    I read your initial post on here and just had one comment about what you said about healthcare professionals. You brought up the fact that they say "oh sorry, did that hurt?". If I am understanding you correctly you are saying that they should know that there is no feeling. But on the other hand, my husband has full feeling and all too often the health care professionals do not even ask, assuming he can't feel. Then my husband either ends up in pain or we have to quick stop them before they do anything. It is frustrating that they just don't ask about your feeling. Everyone's injury is different and they should know better than to assume something. Just my thought.

                    Comment


                      #11
                      John Q... like in the movie???

                      My mom as my LIFESAVING CAREGIVER used to get very annoyed when people would tell her: "Oh! you r so lucky that God chose your daughter". As well as when I used to move my toes and the doctors would tell her she was just "seen what she wanted to believe", then a few months later, one doc saw me move them and was so frustrated trying to telll his collegues "I SAW HER MOVE THEM TOO!"

                      As time has passed, we have BOTH learned to deal with people in a way that don't take so much anger... I tune them out or try and explain things, she OTOH don't speak tooo good English so she dosen't know most of the time what people say.

                      Yesterday in a pharmacy as im waiting for my prescription, 2 latin guys walk in, they assume i dont speak spanish and 1 tells the other one (who kept staring at me) "Poor girl" in spanish... then they started whispering. At first, I was going to snap back but, after seeing them how IGNORANT they were... it just wasent worth my time... There biggest concern was that there blood presure was 145 over 80... OH MY GOD!!!!!!!! THEY HAVE SOOOOO MANY PROBLEMS IN LIFE [img]/forum/images/smilies/rolleyes.gif[/img]


                      ...and the soul afraid of dyin'... That never learns to live...
                      Thoughts become things, choose the good ones!

                      Comment


                        #12
                        Pollett, that is so sad (and maddening) that your Doctors did not believe you and your Mother when you moved your toes - and then not to believe another Doctor!!! That's awful. I can't believe that professional people would act like that. We were so lucky when my daughter, Karen, was finally able to move her toes a tiny bit......both Karen and her boyfriend started crying (with happiness). Then when her Dad & I came in, she showed us, and we were crying too. Then she rang for her Nurse and showed her, and she started to cry. Everyone was so happy for her.......even her Doctors, and the Surgeon told her "you WILL walk again". It was very uplifting. I am angered that there are so many negative people in the SCI medical field that discourage people. Luckily, we didn't meet them!

                        Comment


                          #13
                          Originally posted by KDK513:

                          RTR, we are different. No matter how you may wish it is not so, we are different. Our bodies no longer function as they were intended to. We no longer look the same. We cannot function in this world the same way we used to or rather as others do. What is so wrong about pointing out our differences and then learning to accept them?
                          You're right. I am different. I'm different because I have brown hair, like cherry pie instead of cake,and enjoy sitting in a windowseat reading a good book. Are any of these differences enough to separate me from other people? If not, then why is the ability to walk such a critical difference?

                          Our bodies don't function as they were intended to? People with pacemakers, a "bum knee," or poor eyesight don't function "as intended" either. That pool of "different" people is getting pretty big.

                          We don't look the same? What? Picture any AB woman in front of a mirror. She sits, she stands, she sits, she stands, she sits, she stands... Does she look different? Ooh, that's Sally standing there. Whoops, where did Sally go? There's just that freaky looking woman sitting there! LOL

                          Can't function as others do? In some ways, that's true. However, an opposable thumb isn't the only thing that makes us human. I work. I play. I love. Others love me ... and my dog still thinks I'm just as wonderful as ever, right up there on the doggie scale of goodness with a piece of pizza and a ride in the car!

                          Regardless of my differences, I am more similar to other people than I am different. "Normal" ranges from less than 5-ft tall to more than 6-ft tall. Can't it include sitting or standing? When people focus on differences, they forget about similarities. In the extreme, people can think, "They" are different. "We" are the same. Focusing on differences makes them seem more important than they really are. Focusing on similarities makes a wheelchair insignificant in the big picture.

                          I'm not jumping on you. We both deal with the rest of the world every day. Hand-in-hand, caregivers face the same John Q. Public as the caregivees face. These are important concepts to explore. We have to know how we feel about these issues so we can respond appropriately when John Q. Public doesn't behave well.

                          Comment


                            #14
                            serious response to your actual question--

                            So, Marmalady has asked us two questions:

                            First, what do we think is up with JQ Public . . . he's ignorant (but teachable, usually) and indifferent (harder to change, but not impossible) and oblivious (and that just means not particularly focussed or aware of what's around him.)

                            None of which makes him evil.

                            Second, what can we possibly do about it . . . well, that's the hard part. On a grand scale, not that much--that's for the Chris Reeves and others with access to those great big microphones. On a personal scale, there's always a friendly smile, a light touch on the arm, a brief explanation:

                            (can you please make room in this elevator for this wheelchair?)
                            (could I ask you to park in a non-disabled spot so this wheelchair can have a way into the building?)
                            (would you mind not reclining your seat into my husbands knees? his legs don't work so he can't get them out of your way--I had to say this on our last airplane ride. The woman jerked her seat up without a word, but for once I didn't care that she was rude.)
                            etc.

                            Of course, mostly I just feel too petty and pissy about everything to be this rational and sweet. Still, it's good to have it in mind as a GOAL for what it would look like to be helpful instead of just critical and defensive.

                            Now that I think of it, there's a middle ground, I suppose, between those lights and cameras and the random people right in our faces. We can, if we're the type, use the little groups and mini-media avenues right in our lives to raise awareness. We can speak up on those talk shows, or write to our newspapers, or volunteer to speak at churches and schools. Maybe this would be effective if we did it in groups of 2 or 3, not all by ourselves!

                            Mostly these kinds of events seem to be about something besides what we're talking about here. Like, before her dad's accident, my daughter told me about a "wheelchair dude" who came to an assembly at her school to tell them about safety in pools. But his family was not there speaking about their issues.

                            Kate

                            Comment


                              #15
                              My PMR will never forget my promise

                              Originally posted by Polett:

                              My mom as my LIFESAVING CAREGIVER used to get very annoyed when people would tell her: "Oh! you r so lucky that God chose your daughter". As well as when I used to move my toes and the doctors would tell her she was just "seen what she wanted to believe", then a few months later, one doc saw me move them and was so frustrated trying to telll his collegues "I SAW HER MOVE THEM TOO!"
                              While in Rehab I was bombarded with the "...you will never move your legs again..." attitude and I became enraged. I finally told my PMR, therapists, and nurses that "if you cannot encourage me to walk then, please, do not discourage me from walking." Turning to my PMR I said "In fact, one of these days I am going to kick you."

                              Fast forward six months. I am in the hospital visiting a former roommate (16 year old boy whom I encouraged to walk) because his mother called and said he had a present for me. I happened to meet my PMR at the nurse's station and engaged her in a conversation. As we talked I reached down and took my right foot off the footrest. When my PMR stepped closer (I cannot recall why) I swung my foot out and gently kicked her in the shin. Getting no reaction, I kicked her harder. She scowled and said "you just kicked me." I looked her square in the eye and said "I always keep my promises." She realized what I had done and her eyes grew wide and she said "you KICKED me!!"

                              She tells this story to her collegues when they meet at conventions. And she has stopped telling patients they will never move again.

                              Oh, yeah, the present from that 16 year old boy? He took his mother's hands, stood up and wiggled his fanny while I watched.

                              "And so it begins."
                              "And so it begins."

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