Re: I need them to understand!

[Guest guest]

Hi Deepa,

I live in Finland, Northern Europe, where there are a little more disabled

people out active in the streets so people are a little more used to us.

Even so, among my non-disabled friends and relatives, only the ones who are

really close do understand. Other people may seem polite, but then, all of

sudden, they make comments which show that they really don't have a clue

about the things that I have to deal with on a daily basis.

It takes a lot patience and explanation to make other people understand. I

have to explain over and over again that my disability makes it impossible

for me to eat certain kinds of food simply because I cannot chew them. But

if the one who is listening has an open mind then maybe after the third of

or the fifth or the tenth time they'll understand. They'll see that it is

not you who is being difficult but that some things are - plain and simple -

a consequence of your disability.

There are two things that may be could help you a little bit.

Idea 1. Take somebody who knows you very well. Ask that person to help you

in explaining. If you are very close to your sister then ask your sister to

explain your aunt who is scolding you what really is wrong with you.

Idea 2. Try and see if there are other disabled people in your city. If you

find other people, go and talk to them and see if you can become friends.

Then maybe one day you could introduce these friends of yours to your

family. I think that if your family saw that there exist other people with

disabilities then maybe it might become easier for them to understand _your_

disability.

These are just ideas out of my head. Please let me know what you think about

them!

hugs

Taya

P.S. Don't forget about Mobility India.

I need them to understand!

> hI everyone,

>

> Hav u ever come across people saying u :

>

> UR LAZY,

> U DONT TRY TO LIFT UR HAND,

> UR ASKING HELP FOR EVERY LITTLE THINGS U WANT TO DO,

> U DONT EVEN ROLL IN THE NITE BY URSELF... ,

> U HAV NO CONFIDIENCE IN U ,

> U ALWAYS SAY UR TIRED FOR NO REASON ...

> U DONT EAT URSELF WITHOUT BENDING UR HEAD ...

> UR LAZY DAY BY DAY!

>

> All this kinda scoldng i get everyday , No-1 knows

> Wat's SMA type II ?... indeed they dont even know wat

> my condition is doin to me ...

> In india mucular dysrophy is not know by many

> people...its weird when they c me nice n fit outside

> and i cant do things normal from inside!

>

> wat shud i do now...i want them to understand but ...i

> cant do it coz once i use my terms to explain they say

> im not doctor so i kno everything... feel like crying

> and hating myself for who im

> DEEPA

>

> Love u

>

>

>

>

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[Guest guest]

Deepa,

I have this problem w/extended family mostly. Sometimes my mom. Besides my

mom, none of them say it to my face, but think I'm asking my mom to do

things I can, thus being lazy. My mom constantly tells me I'm not trying hard

enough, and if I didn't have nurses/PCA's I'd get stronger and do things

myself.

I tell her she's in denial. I had a very huge decline in ability in 1999,

and everyone still seems to think I can do things I did then. I just try to

ignore them.

Kimi

In a message dated 1/9/2006 2:32:48 A.M. Eastern Standard Time,

deepatarzan@... writes:

hI everyone,

Hav u ever come across people saying u :

UR LAZY,

U DONT TRY TO LIFT UR HAND,

UR ASKING HELP FOR EVERY LITTLE THINGS U WANT TO DO,

U DONT EVEN ROLL IN THE NITE BY URSELF... ,

U HAV NO CONFIDIENCE IN U ,

U ALWAYS SAY UR TIRED FOR NO REASON ...

U DONT EAT URSELF WITHOUT BENDING UR HEAD ...

UR LAZY DAY BY DAY!

All this kinda scoldng i get everyday , No-1 knows

Wat's SMA type II ?... indeed they dont even know wat

my condition is doin to me ...

In india mucular dysrophy is not know by many

people...its weird when they c me nice n fit outside

and i cant do things normal from inside!

wat shud i do now...i want them to understand but ...i

cant do it coz once i use my terms to explain they say

im not doctor so i kno everything... feel like crying

and hating myself for who im

DEEPA

Love u

[Guest guest]

deepa,

i'm glad to see you're okay. i never heard back from you about the e-

mail i sent you off-list. just checking how you want to proceed on

getting you a power wheelchair.

alana