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    Old 09-15-2004, 01:37 PM   #1
    Alinka
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    Wierd reactions of people to CP

    Hallo, all

    I had a strange day today - in the morning I was going to work by tram, sitting there, looking out of the window and suddenly there came an elderly lady to me and she started to caress my hair and say: "Oh, what a pity! Such a lovely girl! That is really a pity that you will never marry anyone..." Needless to say, I felt very strange.

    Then I went to the underground and I fell over - Anyway, there was some mother with his child and the boy said very loudly: "That lady is really strange, isnīt she, mum?" to which his mother replied something like yes, she certainly is strange. At that point I was really angry (mind you, this was a second strange experience in one day) and I said: "Havenīt you never fallen over? Iīm sure you must have..." , which was the only reaction I could get out of myself. I was by no means strange in terms of clothing or hair-style - a business-look woman as requiired by the companies I teach at.

    I fell over in a very strange way, so in fact I had some difficulty getting home and because of a lot of walking today my feet hurt like hell - I came home crying because of the pain and I am quite depressed - anyway, I just wanted to ask you people - do you experience wierd reactions of the "normal population"? And how do you tend to react? Ignore? Laugh? Explain? What seems to work for you?

    Alinka

     
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    Old 09-15-2004, 01:59 PM   #2
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    Re: Wierd reactions of people to CP

    Well, I almost never explain, and if I do I don't explain fully, because it's like I just don't know how to verbalize it (I'm working on that though). Most of the time I ignore it, but it's really hard to keep that all inside.

     
    Old 09-15-2004, 05:23 PM   #3
    lastramy
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    Re: Wierd reactions of people to CP

    Alinka,

    Boy can I relate to this.................................... ........

    I have been getting the stares and the funny looks because I wear a brace and I use a cane. What is an even bigger problem is the fact that until 2 years ago I had a pretty good walk. Then the range of motion got harder and the gait got worse and the compensation mechanism finally gave out, and the foot started dropping. So NOW I look like someone with CP whereas I didn't before. Before I could compensate well so I had just a slight limp.

    If people aren't staring or commenting, they are asking me if I can still do my job. I get babied quite often, and in my evaluations I have that I am coping with a chronic condition. It was never noted before!!!!!

    I get very depressed when an older lady who can out walk me starts feeling sorry for me. I laugh most of it off and tell people that I certainly didn't ask for the CP but I am learning to live with it.

    CP does not mean that we can't work....we can. We can get married, we can have children............I have a 7 yr old daughter. We can go to school and to college. I have a bachelors of science degree and I am currently taking a graduate molecular genetics course!

    I fall all the time now and I look like I am drunk quite a bit. I get lots of bruises and I hurt all the time. I get very depressed, but I also live for today and let tomorrow take care of itself.

    I think MOST cp people are hard working, dedicated individuals who know how to improvise with the situations they face. I think you Alinka deserve a gold star for achievement in many areas.
    I would just laugh as much off as you can. To try and explain just makes matters more confusing for people who don't know about CP.

    I am very sorry that you had such a day as you did. I think it is all the more reason why people need to understand that it is a chronic problem throughout life and not just a problem for children. I don't think a lot of people realize that CP has so many forms and goes for the duration of life not just childhood. I think the public needs to be more aware of the aadult aspects of CP as well as I think there should be more funding for research into how to help adults with the aging aspect oc cerebral palsy.
    We probably will never be able to get rid of CP but we should be able to help those who have it learn how to "age better" with it.

    Geeez I hope that made sense to you. I had a very similar situation happen to me just the other day. Your post really rang home for me.

    Don't let it get to you, and keep being the very strong and determined person that you are! Keep that chin held high!

    Lastramy

     
    Old 09-15-2004, 05:30 PM   #4
    lastramy
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    Re: Wierd reactions of people to CP

    Alinka,

    Let me clarify something...........

    I think the public needs to be made more aware of CP through the right channels. I think the public needs to know through a larger scope just how many of us are out there coping with CP.
    When I say trying to explain would just cause confusion it is because the public doesn't know enough about CP. It is not one of the "glamour" conditions that get recognized through the media and that a lot of people will donate money for as opposed to diabetes and cancer that EVERYONE can understand for the most part.

    I may just be making myself even harder to understand so I better stop here.
    I didn't mean to confuse you.

    Lastramy

     
    Old 09-15-2004, 08:20 PM   #5
    Midget
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    Re: Wierd reactions of people to CP

    I used to get upset, I guess, when I was little...or I'd get embarassed and ignore people or what not. But now it's like...if people ask, I answer...And when people stare I usually just smile or wander away or whatever. :P I wear my braces every I go...I was in the store with like my mom I think or someone...and I was just like looking around, and this little girl was like staring at me...I looked at her, and she like ran away to her mom! LOL

    The time before last we were in Las Vegas, and walking through this big corwd with my dad...lol I was just looking for a way out of this crowd, and I like ran into this guy or something...lol. Then he turned around and looked and he was like "What the *****?" I never figured out if he was talking to me or someone else or what...lol

     
    Old 09-15-2004, 08:45 PM   #6
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    Re: Wierd reactions of people to CP

    People seem to get very upset when I run into them, and seeing as I am pretty clumsy that happens often, lol.

     
    Old 09-15-2004, 09:02 PM   #7
    Midget
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    Re: Wierd reactions of people to CP

    LOL...it was like really crowded...I had like no where to go. Wow I hate crowds. :P

     
    Old 09-15-2004, 09:35 PM   #8
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    Re: Wierd reactions of people to CP

    Quote:
    Originally Posted by Midget
    Wow I hate crowds. :P
    That makes 2 of us! lol

     
    Old 09-15-2004, 10:01 PM   #9
    Christine23
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    Re: Wierd reactions of people to CP

    Quote:
    Originally Posted by lastramy
    Alinka,

    Let me clarify something...........

    I think the public needs to be made more aware of CP through the right channels. I think the public needs to know through a larger scope just how many of us are out there coping with CP.
    When I say trying to explain would just cause confusion it is because the public doesn't know enough about CP.
    I agree, I think people really do not know what CP is. It seems if there is any public exposure of the condition, they usually only show cute little kids.Sometimes I wonder if the AB population realizes that the little kids grow up into adults eventually.

    I think the main reason CP doesn't get as much notice as other conditions is that it doesn't affect a very big portion of the population, and you don't die from it like you could with ALS or MD.

    About Cp causing you to look strange or drunk, I think this is one of the drawbacks if you are able to walk with out mobility aids. While I think it would be cool to walk a long distance with out my crutches, I think that having the crutches makes people realize that I do have a disability faster than they might if they saw me walking without my crutches (which I do around the house)

    People have treated me wierd, in that they usually completely ignore me unless I speak to them first. It always catches me off guard when people start a conversation with me first. I usually have little kids stare at me and I might hear them say, "Mommy whats wrong with her?" I usually ignore them unless they speak to me directly which a child will occasionally do. The kids usually are just curious, (which I can relate to) so I just say something like.... "I was born this way, this is how God wanted it. My legs just don't work very good, so these crutches help me walk better, and keep me from falling over." this usually is enough explanation for them, and they go on their way. I think some disabled people might not like it when they are asked questions, but if little kids or older people don't ask how will they learn? I actually think it is fun trying to explain it to a little kid. I want them to see me as a regular person who happens to be a little different.

    I do have to say that if someone is openly rude like the people were to Alinka, I would NOT want to talk to them.

    Quote:
    Originally Posted by Alinka
    I was going to work by tram, sitting there, looking out of the window and suddenly there came an elderly lady to me and she started to caress my hair and say: "Oh, what a pity! Such a lovely girl! That is really a pity that you will never marry anyone..." Needless to say, I felt very strange.
    This is very strange!! I'm not sure how I'd react. I'd probably smile, and think that she said those things because she is OLD

    Here is one situation where I over heard a "strange comment"

    Last year, one of my cousins was getting married (I have about 10 adult cousins on my mom's side of the family), another one of my aunts (not the mother to the groom) was greeting my cousin and she said, "Well, we only have "Chris", "Maria" and "Luke" left to get married now!" I was the only one she left out! I don't think my aunt realized I heard her say this, but it really struck a nerve with me. I don't think she did it to hurt me, but it was one of those things that people let slip out some time. It suprised me because my family has always treated me the same as all the other kids in the familly. I kind of felt like "so, this is how they must really feel about my possibility of marriage" I don't think they ALL feel this way, but it still bothered me that it happened.

    Alinka,

    Hi, (I really like your name. It is very pretty!)

    I have a few questions, I hope you don't mind

    How do people in your country, generally, view those with CP? I've wondered if it is much different than how we are viewed here in the US My first post to this board was about a friend who I had REALLY liked for several years, and I thought he might have felt the same way. (He is engaged so I know for sure he doesn't like me) This guy is originallly from a former Soviet country and when I was wondering if he might like me, I wondered if his cultural upbringing had a big affect on how he viewed me. Now, I wonder if he saw me as an equal, or did he spend all those years being nice because he pitied me? (I don't think he did, but I still wonder) I have also wondered what his family would have thought of me IF he did like me. He never asked any questions questions about my disability. A few months ago I off handedly mentioned my CP, thinking he might ask something about it then, but again he said nothing. Sorry for all the questions.

    (I think I wrote the word "wonder" too many times )

     
    Old 09-15-2004, 11:43 PM   #10
    Alinka
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    Re: Wierd reactions of people to CP

    Quote:
    Originally Posted by lastramy
    Alinka,

    I think the public needs to be made more aware of CP through the right channels. I think the public needs to know through a larger scope just how many of us are out there coping with CP.
    When I say trying to explain would just cause confusion it is because the public doesn't know enough about CP. It is not one of the "glamour" conditions that get recognized through the media and that a lot of people will donate money for as opposed to diabetes and cancer that EVERYONE can understand for the most part.

    I may just be making myself even harder to understand so I better stop here.
    I didn't mean to confuse you.

    Lastramy
    Lastramy,

    I think I understand what you mean by this. I feel that the people really do not see that these cute children with CP do indeed grow to be "ugly adults" There is so little awareness of this fact that it really strikes me.


    Also, I think that too many people view CP as a disease rather than, say, a different moving pattern. I mean everybody is different in their walking pattern, even the normal population and you can actually tell any person from the way s/he is moving, so why make some group different ??

    Also, you mentioned that you have it noted in your evaluation that you have to cope with a chronic condition - well I know that too and I tend to use it for my benefit - when asked something like: "Can you cope at THIS workplace?" I usually reply and say: "Well, I have been coping for almost 30 years and I have learned my limits", which is something that not all "healthy people" can say. In this way I turn the originally negative point into a positive one

    Alinka

     
    Old 09-15-2004, 11:47 PM   #11
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    Re: Wierd reactions of people to CP

    Not two, but three I think.

     
    Old 09-16-2004, 12:37 AM   #12
    Alinka
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    Re: Wierd reactions of people to CP

    Dear Christine23,

    I hear you on saying that CP is not getting attention, as it doesnīt threaten your liife. Also, being born with the condition is something that affects the peopleīs understanding. I feel that e.g. people who ended up in a wheelchair say after a car accident, are viewed very often as heroes who could fight the condition....whereas fighting is seen as something neutral in CP people. "You were born that way, so you can do it, but what a pity for a normal person to become disabled!" - a true statement I heard somewhere!!!!

    Now I know that it is hard for these people to cope and I am not trying to diminish their achievements, yet this feels strange.

    Now letīs answer your questions, shall we? I donīt mind any questions really...Remember, I am a teacher , so I love questions......


    How do people in your country, generally, view those with CP? I've wondered if it is much different than how we are viewed here in the US?

    Well, I think that because of the isolation of the people with a disability during the Communist era, people still do not know really what to think or say and it is something that is sitting deep in them.

    They might be afraid to approach you - either because they are afraid to hurt you by doing so, or because they are afraid of being "as strange as you are" when socialising with you. It generally takes them a longer time to get used to the idea, that there is actually nothing wrong with you, if you know what I mean. It takes time, patience, and hard work of both parties. and that is particulary true when you want to work on a partner relationship. However, I think that once the people learn that you are a normal human being, they stop seeing you as a disabled person in a way and at that point it will no longer matter for them that you have problems with your walking.

    Now the parents of your potential partner will probably have to go through something like this:

    1) "What? my son with a disabled girl-friend? Have I not brought him up for something better?" ( If they are really afraid, they might even want to press the boy into leaving you). Then there is this second stage of

    2) "Well, you know our son is a bit strange - he found a disabled girl-friend, well, weīll see if he sticks to it"
    and then

    3) The girl is quite nice, actually...

    and finally

    4) "What do you mean by her being strange, Mrs. Smith? She is as normal as everybody else in our family...."

    Does this answer help?

    Alinka

     
    Old 09-16-2004, 01:11 AM   #13
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    Re: Wierd reactions of people to CP

    Quote:
    Originally Posted by Alinka
    Dear Christine23,

    I feel that e.g. people who ended up in a wheelchair say after a car accident, are viewed very often as heroes who could fight the condition....whereas fighting is seen as something neutral in CP people. "You were born that way, so you can do it, but what a pity for a normal person to become disabled!" - a true statement I heard somewhere!!!!
    I feel the same way. I know when someone becomes disabled itcan be devistating to them, but It does seem that if someone has a tramatic story people think they have it worse than those of us who have had to deal with it all our lives.

    A few months ago I saw a television show here that remodeled the home (for free) of a person who had a spinal cord injury. Not only did they make it accessible (which was really good) but they had all of these fancy extra things in the house, that were really nice, but he could have probably survived with out them. The show focused on how this person suffered since his accident...etc. I am sure they were trying to get everyone watching the TV all emotional I remember thinking "What about all of us who have had to deal with these obstacles from when we were born?" It would be nice if our houses could be fixed up as well.

    Quote:
    Originally Posted by Alinka

    Well, I think that because of the isolation of the people with a disability during the Communist era, people still do not know really what to think or say and it is something that is sitting deep in them.

    They might be afraid to approach you - either because they are afraid to hurt you by doing so, or because they are afraid of being "as strange as you are" when socialising with you. It generally takes them a longer time to get used to the idea, that there is actually nothing wrong with you, if you know what I mean.
    The reactions of people there seem the same as those here in the US.

    This guy I was interested in is engaged, so nothing will come of that situation, but I have spent a long time thinking about these issues that I still wanted to know what your opinion would be. I actually tried looking up information on the internet about how different cultures viewed the disabled, but I did not find much information. Now, I think this might be because people no matter what their cutural background, probably view the disabled in much the same way. Anyway, thank you for answering my questions!

     
    Old 09-16-2004, 01:31 AM   #14
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    Re: Wierd reactions of people to CP

    Quote:
    Originally Posted by Alinka

    They might be afraid to approach you - either because they are afraid to hurt you by doing so, or because they are afraid of being "as strange as you are" when socialising with you.
    I was thinking more about this and I have something to add. Earlier I mentioned that when someone speaks to me before I talk to them it suprises me because I am usually the one to start a conversation. At my university I've had two people come up to me and introduce themselves. One was my friend I mentioned in my previous post, and the other person was a girl who is an immigrant from India. In my situation, it seems that those from other countries feel more comfortable being around me then those who were born here This was another reason, why I have wondered how people from different cultures view the disabled.

     
    Old 09-16-2004, 01:41 AM   #15
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    Re: Wierd reactions of people to CP

    I experienced wierd reactions from the "normal" population too. I wish I could speak English better to tell my "experiences" to you... Anyway, I think all the people have experiences with wierd reactions, disabled or not, but disabled people a bit more often Thatīs all what I am able to say right now .

    Katarinka28 (zavinac centrum bodka sk)

     
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