Re: Educating others about CMT

[Guest guest]

In my experience I think you have to get to a certain point in accepting that

you have CMT before you start to explain/educate others. My experience - which

may well be different to others - is that anger with people asking is due to

frustration and maybe not having fully got to grips with it personally. As i

said, that's my personal experience.

 

Scotland is still quite community minded; and if I struggle or fall people still

ask if they can help. They'e only doing their best as they see fit and as a

result I think they are due some explanation.

 

There'll always be the ignorant and the rude and all you can do is try to rise

above them.

 

Regards

 

Fiona

Glasgow Scotland

[Guest guest]

Fiona,

I am sure you are right about acceptance. If we accept that we are like this, we

can explain to others without being offended. But there is still the privacy

thing. You can ask someone you know and care about, but asking strangers is

no-no. I have never asked anyone I am not aquainted with  about their gait,

overweight or whatever issue they got. It's only for curiosity, and the only

thing it signals is: " I have noticed that you are strange " .

Even if we accept CMT we do not want strangers to go around and tell us that

they have noticed. It's simply rude. If I fall and someone who helps me asks

about my condition, that's different. Than we have got a relationship,

needing-helper. But just ask in a shop or on the street. That's just curiosity

and not polite. So it does not require a polite answer. " I am sorry, but it is

my business not yours " should be enough.

Beata

[Guest guest]

I almost feel like I always have to explain myself. I want people to know why I

am so clumsy, why I am using the handicapped parking, or why I can't help them

move or carry something. I think if I do, they will treat me better. They won't

think me lazy or rude.

>

[Guest guest]

I don't see educating others as either positive or negative. I don't believe

that it is connected to acceptance or age of diagnosis. I think that we all

have different walks and no walk is more important than another.

I believe that much invaluable info is shared on this group in regards to

research and resources, but my inbox is full of people trying to tell people why

they have adjusted better, why others need to act as they do, their

responsibilities as a representative of CMT. How people with CMT seem more

angry and why.

I don't want to sound negative, but really get a life. Volunteer give in a way

that is constructive. Ask a local school or civic group if you can talk about

CMT & the need for research. Focus all of this energy in a way that doesn't

just bring others down.

Chris

________________________________

From: cathy.power <slumpville@...>

Sent: Thu, January 21, 2010 10:38:58 AM

Subject: Re: Educating others about CMT

I almost feel like I always have to explain myself. I want people to know why I

am so clumsy, why I am using the handicapped parking, or why I can't help them

move or carry something. I think if I do, they will treat me better. They won't

think me lazy or rude.

>

[Guest guest]

,

I feel the same way.I do not want people to think of me as lazy.

Geoff

>>

[Guest guest]

People are very different from each other.

Some people care about life. Some people care about research and resources.

Some people need to share their own feeings. Some people want to talk about

their experience. These are just different needs.

This is an open online discussion board, just like other kinds of online

discussion board. Every member has the free will to choose what he or she

wants to give and receive.

If a person doesn't like to share anything, he or she does not have to post

anything. If a person doesn't like to hear anything, he or she does not have

to read every post.

This is the individual's free will to make his or her decisions.

On Fri, Jan 22, 2010 at 3:05 AM, Geoff Rev <the420drummer@...> wrote:

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> ,

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> I feel the same way.I do not want people to think of me as lazy.

>

> Geoff

>

>

> >>

[Guest guest]

Carolione! Way to go! That is exactly what needs to be said in this group!

Dawn