Re: Keeping up with (who)? Yourself or Them/

[Guest guest]

Angie,

Are you saying you never felt like your disability held others back b/c they

chose to be w/u? I know in reality my friends would do anything for me, but

I do feel a sence of guilt when I hold them back. You never went through

the feeling when or be4 marrying your AB husband?

I totally understand 's comment.

Kimi

In a message dated 8/6/2005 7:51:26 P.M. Eastern Daylight Time,

angie@... writes:

,

I can sort of understand what you're trying to convey, but the following

words

(yours) are the kind of words I would love every person to avoid.

On 2005.08.06 14:12, *~~* wrote:

>

> So for me, if you can change even one thing that will

> let you do things with others, such as tag and running

> with them or riding bikes... its not so you can 'make

> friends' its so you can feel normal for once and not

> feel like you are ruining your friends fun just

> because they dont want to leave you out!

What are you saying?

Am I reading this right? I came away with the idea that you would feel

compelled to change how you " operate / manage " your friendships in ways that

would make it more " normal " just to avoid an alledged sense of ruining their

fun? Why do you need to change to accommodate them? You did say your friends

sit with you at times when the rest of them go off to do whatever, but it's

their choosing to hang with you. If they truly felt you were ruining their

fun then you wouldn't be anywhere near them anyways as they'd likely not

have

bothered to take you along in the first place. They sit / hang with you only

if they see you as a friend. You should stop feeling like you're ruining

their fun because of whatever you're preconceived ideals are of what is

normal.

Once again ... no one should have to change spots to fit in. Be the colour,

size and bounce you want to be and to take whatever steps to achieve it.

Before you know it, you're in a very colourful world.

I also must say that I know I am likely coming across on the " unrealistic /

fairytale " side, but the reality is that if your insides are up and positive

then it makes it easier to cope with reality.

Angie

[Guest guest]

,

I can sort of understand what you're trying to convey, but the following words

(yours) are the kind of words I would love every person to avoid.

On 2005.08.06 14:12, *~~* wrote:

>

> So for me, if you can change even one thing that will

> let you do things with others, such as tag and running

> with them or riding bikes... its not so you can 'make

> friends' its so you can feel normal for once and not

> feel like you are ruining your friends fun just

> because they dont want to leave you out!

What are you saying?

Am I reading this right? I came away with the idea that you would feel

compelled to change how you " operate / manage " your friendships in ways that

would make it more " normal " just to avoid an alledged sense of ruining their

fun? Why do you need to change to accommodate them? You did say your friends

sit with you at times when the rest of them go off to do whatever, but it's

their choosing to hang with you. If they truly felt you were ruining their

fun then you wouldn't be anywhere near them anyways as they'd likely not have

bothered to take you along in the first place. They sit / hang with you only

if they see you as a friend. You should stop feeling like you're ruining

their fun because of whatever you're preconceived ideals are of what is

normal.

Once again ... no one should have to change spots to fit in. Be the colour,

size and bounce you want to be and to take whatever steps to achieve it.

Before you know it, you're in a very colourful world.

I also must say that I know I am likely coming across on the " unrealistic /

fairytale " side, but the reality is that if your insides are up and positive

then it makes it easier to cope with reality.

Angie

[Guest guest]

I second that, Kimi. I understand what is saying completely.

Especially in college and local bars and pubs were not all w/c

friendly - I knew my sister and friends wanted to go to some of the

hot places on weekends but didn't because I was with them. At first,

when I was a teenager and dealing with " I feel bad my friends don't go

places my wheelchair can't " , I really felt bad about it. However, I've

learned it's a part of life and my friends have too. When they really

want to go there, they'll let me know and we'll plan a w/c-friendly

event and then when I've had enough of the night they'll drop me at

home and go out and continue partying. I'm okay with that. I've also

learned to be fine with " holding my friends back " from enjoying

non-accessible venues because my friends are AWESOME about speaking up

to managers and owners of places we encounter which are not w/c

friendly. They advocate like pros even if I'm not with them now! They

don't even want to financially support a non-accessible restaurant,

bar, what have you.

My sister is planning her wedding, so is my best friend - they are

both looking at reception halls and are both immediately declining a

full tour if they arrive and notice there isn't ACCEPTABLE wheelchair

access or the owners are unwilling to negotiate on a w/c access route

the girls are comfortable with offering me to use for THEIR big days -

even though I've said, I don't mind using a backdoor entrance or not

having a full w/c accessible bathroom - they flat out refuse to hear

more and go into advocate-mode.

<3 Kendra

> >

> > So for me, if you can change even one thing that will

> > let you do things with others, such as tag and running

> > with them or riding bikes... its not so you can 'make

> > friends' its so you can feel normal for once and not

> > feel like you are ruining your friends fun just

> > because they dont want to leave you out!

>

> What are you saying?

>

> Am I reading this right? I came away with the idea that you would feel

> compelled to change how you " operate / manage " your friendships in

ways that

> would make it more " normal " just to avoid an alledged sense of

ruining their

> fun? Why do you need to change to accommodate them? You did say

your friends

> sit with you at times when the rest of them go off to do whatever,

but it's

> their choosing to hang with you. If they truly felt you were

ruining their

> fun then you wouldn't be anywhere near them anyways as they'd

likely not

> have

> bothered to take you along in the first place. They sit / hang with

you only

> if they see you as a friend. You should stop feeling like you're

ruining

> their fun because of whatever you're preconceived ideals are of

what is

> normal.

>

> Once again ... no one should have to change spots to fit in. Be the

colour,

> size and bounce you want to be and to take whatever steps to

achieve it.

> Before you know it, you're in a very colourful world.

>

> I also must say that I know I am likely coming across on the

" unrealistic /

> fairytale " side, but the reality is that if your insides are up and

positive

> then it makes it easier to cope with reality.

>

> Angie

>

>

>

>

>

>

>

[Guest guest]

In a message dated 8/7/2005 10:13:30 AM Mountain Daylight Time,

angie@... writes:

> I am not knocking the independence the iBOTS offer, but once again, it's

> forcing us to change ourselves as individuals and not making a more general,

>

> acceptable environmental change instead.

I'm not completely sure if the iBOT would be practical for me or not. But

supposing it is everything they say it is... How would that force me to change

myself as an individual? Changing my wheelchair is not changing who I am. I

still accept that I'm a disabled person who needs extra help to achieve

independence. Switching to the most modern and empowering technology is the

practical

thing to do. It doesn't change me; all it says about me is that I'm doing

everything I can to have the most independence as possible.

-e

[Guest guest]

Honestly, no.

When I was a kid, I had two circles of friends; school friends and home

friends. My school friends were all disabled because I had no w/c accessible

grade schools for me to attend. Seeing such diversity in abilities made me

feel I had the world in my pocket. I ended up helping them more often and we

had a lot in common, except some didn't live at home with family.

My home friends were mainly those kids my sisters went to school with and

those on our streets. Most of us had similar upbringing so house/home rules

were easy to handle. We only had one " rich " friend who got more than the rest

of us, but he shared his stuff with me only. My mom said he had a crush on me

(can't see how ... I was quite the chubby kid back then).

The only time I felt my disability held back my friends was if my batteries

failed. They hated pushing me in it because it was heavier than my manual.

Depending what we had planned, my manual would tag along just in case. By the

time high school rolls around the batteries soon outlasted me!

Angie

On 2005.08.06 21:35, Ksmile96@... wrote:

> Angie,

> Are you saying you never felt like your disability held others back b/c

> they chose to be w/u? I know in reality my friends would do anything for

> me, but I do feel a sence of guilt when I hold them back. You never went

> through the feeling when or be4 marrying your AB husband?

> I totally understand 's comment.

> Kimi

>

>

> In a message dated 8/6/2005 7:51:26 P.M. Eastern Daylight Time,

> angie@... writes:

>

> ,

>

> I can sort of understand what you're trying to convey, but the following

> words

> (yours) are the kind of words I would love every person to avoid.

>

> On 2005.08.06 14:12, *~~* wrote:

> > So for me, if you can change even one thing that will

> > let you do things with others, such as tag and running

> > with them or riding bikes... its not so you can 'make

> > friends' its so you can feel normal for once and not

> > feel like you are ruining your friends fun just

> > because they dont want to leave you out!

>

> What are you saying?

>

> Am I reading this right? I came away with the idea that you would feel

> compelled to change how you " operate / manage " your friendships in ways

> that would make it more " normal " just to avoid an alledged sense of

> ruining their fun? Why do you need to change to accommodate them? You did

> say your friends sit with you at times when the rest of them go off to do

> whatever, but it's their choosing to hang with you. If they truly felt you

> were ruining their fun then you wouldn't be anywhere near them anyways as

> they'd likely not have

> bothered to take you along in the first place. They sit / hang with you

> only if they see you as a friend. You should stop feeling like you're

> ruining their fun because of whatever you're preconceived ideals are of

> what is normal.

>

> Once again ... no one should have to change spots to fit in. Be the

> colour, size and bounce you want to be and to take whatever steps to

> achieve it. Before you know it, you're in a very colourful world.

>

> I also must say that I know I am likely coming across on the " unrealistic

> / fairytale " side, but the reality is that if your insides are up and

> positive then it makes it easier to cope with reality.

>

> Angie

>

>

>

>

>

>

>

[Guest guest]

Kendra, what's wrong with your sister and friend wearing the advocacy-sweater

if they want to? Hey the more they do then the level of awareness rises and

soon change will follow. By simply ducking in the backdoor makes it harder

for the next generation to get going.

I am of the belief that I do not need to change anything about me. I'd rather

make waves to force the environment to change. If successful in getting such

changes done just because of one persons act then it's cheaper for all. If it

costs 20,000 to install a ramp someplace, public-wise, it's cheaper than

having 1, 2, 3, or more disabled folk buying iBOTS through government or

private insurance or even one man's wallet ... those iBOTS cost 30T each!

(plus only limited to US & UK)

I am not knocking the independence the iBOTS offer, but once again, it's

forcing us to change ourselves as individuals and not making a more general,

acceptable environmental change instead.

Angie

On 2005.08.07 00:57, Kendra wrote:

> I second that, Kimi. I understand what is saying completely.

> Especially in college and local bars and pubs were not all w/c

> friendly - I knew my sister and friends wanted to go to some of the

> hot places on weekends but didn't because I was with them. At first,

> when I was a teenager and dealing with " I feel bad my friends don't go

> places my wheelchair can't " , I really felt bad about it. However, I've

> learned it's a part of life and my friends have too. When they really

> want to go there, they'll let me know and we'll plan a w/c-friendly

> event and then when I've had enough of the night they'll drop me at

> home and go out and continue partying. I'm okay with that. I've also

> learned to be fine with " holding my friends back " from enjoying

> non-accessible venues because my friends are AWESOME about speaking up

> to managers and owners of places we encounter which are not w/c

> friendly. They advocate like pros even if I'm not with them now! They

> don't even want to financially support a non-accessible restaurant,

> bar, what have you.

>

> My sister is planning her wedding, so is my best friend - they are

> both looking at reception halls and are both immediately declining a

> full tour if they arrive and notice there isn't ACCEPTABLE wheelchair

> access or the owners are unwilling to negotiate on a w/c access route

> the girls are comfortable with offering me to use for THEIR big days -

> even though I've said, I don't mind using a backdoor entrance or not

> having a full w/c accessible bathroom - they flat out refuse to hear

> more and go into advocate-mode.

>

> <3 Kendra

>

>

> > > So for me, if you can change even one thing that will

> > > let you do things with others, such as tag and running

> > > with them or riding bikes... its not so you can 'make

> > > friends' its so you can feel normal for once and not

> > > feel like you are ruining your friends fun just

> > > because they dont want to leave you out!

> >

> > What are you saying?

> >

> > Am I reading this right? I came away with the idea that you would feel

> > compelled to change how you " operate / manage " your friendships in

>

> ways that

>

> > would make it more " normal " just to avoid an alledged sense of

>

> ruining their

>

> > fun? Why do you need to change to accommodate them? You did say

>

> your friends

>

> > sit with you at times when the rest of them go off to do whatever,

>

> but it's

>

> > their choosing to hang with you. If they truly felt you were

>

> ruining their

>

> > fun then you wouldn't be anywhere near them anyways as they'd

>

> likely not

>

> > have

> > bothered to take you along in the first place. They sit / hang with

>

> you only

>

> > if they see you as a friend. You should stop feeling like you're

>

> ruining

>

> > their fun because of whatever you're preconceived ideals are of

>

> what is

>

> > normal.

> >

> > Once again ... no one should have to change spots to fit in. Be the

>

> colour,

>

> > size and bounce you want to be and to take whatever steps to

>

> achieve it.

>

> > Before you know it, you're in a very colourful world.

> >

> > I also must say that I know I am likely coming across on the

>

> " unrealistic /

>

> > fairytale " side, but the reality is that if your insides are up and

>

> positive

>

> > then it makes it easier to cope with reality.

> >

> > Angie

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Kendra wrote:

>My sister is planning her wedding, so is my best friend - they are

>both looking at reception halls and are both immediately declining a

>full tour if they arrive and notice there isn't ACCEPTABLE wheelchair

>access or the owners are unwilling to negotiate on a w/c access route

>the girls are comfortable with offering me to use for THEIR big days -

>even though I've said, I don't mind using a backdoor entrance or not

>having a full w/c accessible bathroom - they flat out refuse to hear

>more and go into advocate-mode.

>

It sounds like you have a great sister and friend. My brother had his

wedding reception in a big hoity-toity country club house, where the

only entrance was one of those outside metal add-on wheelchair lifts

hidden in back. To get in or out we had to find one specific guy with

one specific key to operate it. My husband said, " Only your brother

would have his reception here, knowing full well his sister is in a

wheelchair and would probably burn up if there was a fire. " My brother

has the tendency to suggest every activity I can't or would be hard to

do for family get togethers - biking, going to the beach, riding

rollercoasters, etc. I think I'm kind of used to it because I grew up

waiting at exits for my family to get off amusement park rides or baking

in the sun, watching my brothers play baseball. But it drives my

husband absolutely bonkers!

Jenn

[Guest guest]

Even after being married for 14 years, I still get bitten by the " you're

holding everyone back " or the " you're ruining everyone's life " bug. I

worry my kids will grow up hating me. In my sane moments, I know this

is not the case. But the idea has been presented to me by disabled and

non-disabled people alike.

Jenn

[Guest guest]

Angie,

I was almost sure a few threads ago, u stated how u were hesitant for your

husband to marry u b/c he didn't know what he was fully getting himself into,

and he had to reassure you. That's the kinda guilt I'm talking about. Obv

iously back when u were little electric w/c r nothing like now, and did not

have the speed and battery power they have now. You said u played w/the AB

neighborhood kids, how did u keep up w/them when they were running and biking?

Did that make u feel left out or if they gave up those things just to play w/u,

u didn't feel bad? Or r u saying it was a privilegde that they got to stop

and stay to play w/u b/c that gave them variety in their lives?? Your last

comment how u hated when ur friends had to push u when ur batteries failed

shows u did have some guilt to me.

Kimi

In a message dated 8/7/2005 11:56:57 A.M. Eastern Daylight Time,

angie@... writes:

Honestly, no.

When I was a kid, I had two circles of friends; school friends and home

friends. My school friends were all disabled because I had no w/c accessible

grade schools for me to attend. Seeing such diversity in abilities made me

feel I had the world in my pocket. I ended up helping them more often and we

had a lot in common, except some didn't live at home with family.

My home friends were mainly those kids my sisters went to school with and

those on our streets. Most of us had similar upbringing so house/home rules

were easy to handle. We only had one " rich " friend who got more than the

rest

of us, but he shared his stuff with me only. My mom said he had a crush on

me

(can't see how ... I was quite the chubby kid back then).

The only time I felt my disability held back my friends was if my batteries

failed. They hated pushing me in it because it was heavier than my manual.

Depending what we had planned, my manual would tag along just in case. By

the

time high school rolls around the batteries soon outlasted me!

Angie

[Guest guest]

Kendra,

Yes, I always felt bad when plans had to be changed b/c the place wasn't w/c

friendly. Sometimes I did some stupid things to get into those places too

when I insisted they go and they said they wouldn't go w/out me. I too have

decided its just a part of life, and I was just talking to my best friend from

college about holding them back, and she said " the negatives about being

friends w/u were outweighed by the positives. " So 'i do know they valued my

friendship and wouldn't change it, but sometimes that twang of guilt comes and u

cant deny its there.

Kimi

In a message dated 8/7/2005 12:57:25 A.M. Eastern Daylight Time,

kendranicole@... writes:

I second that, Kimi. I understand what is saying completely.

Especially in college and local bars and pubs were not all w/c

friendly - I knew my sister and friends wanted to go to some of the

hot places on weekends but didn't because I was with them. At first,

when I was a teenager and dealing with " I feel bad my friends don't go

places my wheelchair can't " , I really felt bad about it. However, I've

learned it's a part of life and my friends have too. When they really

want to go there, they'll let me know and we'll plan a w/c-friendly

event and then when I've had enough of the night they'll drop me at

home and go out and continue partying. I'm okay with that. I've also

learned to be fine with " holding my friends back " from enjoying

non-accessible venues because my friends are AWESOME about speaking up

to managers and owners of places we encounter which are not w/c

friendly. They advocate like pros even if I'm not with them now! They

don't even want to financially support a non-accessible restaurant,

bar, what have you.

My sister is planning her wedding, so is my best friend - they are

both looking at reception halls and are both immediately declining a

full tour if they arrive and notice there isn't ACCEPTABLE wheelchair

access or the owners are unwilling to negotiate on a w/c access route

the girls are comfortable with offering me to use for THEIR big days -

even though I've said, I don't mind using a backdoor entrance or not

having a full w/c accessible bathroom - they flat out refuse to hear

more and go into advocate-mode.

<3 Kendra

[Guest guest]

Jenn,

I too get bitten by that bug constantly, esp when my mother reminds me every

time shes mad at me. I have decided kids arent in my future b/c I couldn't

bear w/the thought of knowing i couldn't stop them from doing many things

that could harm them even something as small as them touching a hot stove and

they got burnt. That's just my personal decision.

Kimi

In a message dated 8/7/2005 1:49:32 P.M. Eastern Daylight Time,

nekrosys@... writes:

Even after being married for 14 years, I still get bitten by the " you're

holding everyone back " or the " you're ruining everyone's life " bug. I

worry my kids will grow up hating me. In my sane moments, I know this

is not the case. But the idea has been presented to me by disabled and

non-disabled people alike.

Jenn

[Guest guest]

In a message dated 8/7/2005 11:56:59 AM Eastern Standard Time,

You never went

> through the feeling when or be4 marrying your AB husband?

I gotta say hell no this as well.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

A new addition due 12/05- it's a boy!

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

In a message dated 8/8/2005 1:00:12 PM Mountain Daylight Time, angie@...

writes:

>

> (not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE myself

> ...

Haha, I like your spelling! (accentuate?)

> Again, it's not the inside that would change, it's the outside ... how

> society

> looks at you. I have no qualms about how they see me. I am in an electric

> wheelchair ... nothing more.

Society would view me differently in a different wheelchair? I'm not sure

about that, and it's certainly not why I would want a newer, cooler wheelchair.

I

want a chair that expands and enhances my abilities. My chair and other

assistive devices should help me to perform any tasks that my disability makes

difficult. And yes, my height does make a lot of tasks difficult. With my seat

elevator, I can do so much more. And that includes everything from reaching high

elevator buttons and shelves in my kitchen, to seeing over people's heads and

having easier conversations in a crowd. The whole point of any assistive

device is to compensate for the disability.

> The only big thing I have about " advanced technology " is that it too is

> based

> on able-bodied facts. I kinda like the iBOT for it's curb climbing, sand

> trodding, elevation and speed, but the stair climbing scares the heck out of

>

> me. I cannot see how they deem that to be safe? I picture myself, in a

> public

> place, going up stairs only to have an inconsiderate jerk push past and

> knock

> me down .... tumble, tumble, WHACK! I break my arms, legs, or neck or die!

> So

> why not reduce the risk by rallying for a public elevator? Why is it such a

> big deal to enable us wheelies to climb like able-bodied people? It doesn't

> make us any healthier?

I wouldn't want to try the current iBOT's stair climbing either. But

supposing they come out with a more perfected version eventually. Why wouldn't I

want

to be able to climb stairs? Ramps and elevators are nice, but the fact is, a

large part of the world doesn't have them. I want to be able to go to my

friends' houses. I want to go to the local house parties. I want to go upstairs

in

my family's house. Next year I'm going to be teaching in public schools, and I

want to be able to visit my students' homes. I want to travel Europe and go

inside all the historic buildings, cathedrals, castles, etc. Yeah, it's probably

cheaper to adapt my own home than to get a fancy chair. But the fancy chair

opens up the entire world to me. If the technology were available, what's wrong

with wanting that?

[Guest guest]

Angie,

No offense, but from your email comments it seems that you are the " perfect

model " when it comes to feeling guilty or upset about having SMA or being DA.

Are you saying you NEVER have moments when you think, " man life's not

fair, " or " I hate SMA? " I think having these feelings sometimes are normal for

a

DA person. You make it seem life w/a disability is just so " merry. " I feel

that cannot be the reality. If I'm misreading your comments please correct me.

Kimi

In a message dated 8/8/2005 2:24:48 P.M. Eastern Daylight Time,

angie@... writes:

I do hope you honestly let that thought slide right out of your head. You

shouldn't waste any effort dwelling on such negative things.

Angie

[Guest guest]

In a message dated 8/8/2005 3:22:12 PM Mountain Daylight Time, angie@...

writes:

> I think that those who hate it haven't learned how to cope.

And I think that's assuming an awful lot. I'm a very realistic person. If I

take the time to think about the limits SMA puts in my life, then yes, I hate

it. When I want to go out and do something, and SMA prevents me, I hate that.

And I think that's an acceptable way to feel. It doesn't mean that I sit around

drowning in self-pity. I'm a generally happy person, I like my life for the

most part, and I stay busy trying to accomplish a lot of things. I have good

friends who don't treat me differently because of my disability. I have a good

family. Life is good. But I'm still aware that SMA sometimes inconveniences the

people around me, and I wish it didn't. I'm very aware that SMA makes simple

tasks ten times harder for me, and I don't like it. I don't have to like it. I

just have to deal with it and allow other things to make me happy.

It's very possible to do more than just cope, but to be a happy,

well-adjusted person, and yet still resent the extra challenges of SMA. It's

perfectly

healthy.

-e

[Guest guest]

I do hope you honestly let that thought slide right out of your head. You

shouldn't waste any effort dwelling on such negative things.

Angie

On 2005.08.07 13:48, Jenn Malatesta wrote:

> Even after being married for 14 years, I still get bitten by the " you're

> holding everyone back " or the " you're ruining everyone's life " bug. I

> worry my kids will grow up hating me. In my sane moments, I know this

> is not the case. But the idea has been presented to me by disabled and

> non-disabled people alike.

>

> Jenn

>

>

>

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[Guest guest]

Angie,

You seemed to contradict yourself a lil i think. You said 1st:

" I have NEVER bought any assistive device (beyond health reasons) in order

to

make me fit in or make it easier for me to socialize with alledged friends.

I

base getting items based on my needs, physical ones mainly. "

Then said:

" My main drive is to

(not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE myself

....

I don't walk, so I go for rolling on wheels, If I did stand, I'd be only a

tad taller than 5.1, so no need for me to exceed my 48 " height sitting down.

"

I looked up accentuate and one of the definitions was: " To pronounce with a

stress or accent. " To me to accentuate oneself is to do it something to

accent yourself in order for others to see you better, or to make you stand

out,

so people interact w/u better. I don't think it's just a physical thing. If

you were trying to make yourself stand out, its not just physical, but

attracts attention which requires socialization. And isnt socialization a

basic

need? I'm not sure if I'm conveying myself well, but to me someone usually

accentuates themselves to grab attention to others, or saying " Hey! " so your

need to be seen is met. It makes it easier to socialize once you have gotten

their attention. So anything that assists you in doing this IS part of a

need. You said " I have no qualms about how they see me. I am in an electric

wheelchair ... nothing more. " So the type of wc I pick changes the way I

accentuate?

Are you getting my point?

Also you stated:

" I NEVER viewed myself as " disabled " simply because I don't " perform " daily

activities that most of us take for granted "

I don't understand this statement. I also looked up disabled and one of the

definitions was:

" Impaired, as in physical functioning. " Whats the difference between

perform and function? " What is your defintion of disabled? I believe part of

being

disabled is not being able to do one or more of acts of daily living, which

are usually the ones AB ppl take for granted. Yes if you were AB you would

only be 48'' sitting down, but u would be able to change that easily by getting

into a higher chair, sitting on something that boosts your height, etc, so

why shouldn't an assistive device like a wc do this for someone who cant? I

just didn't understand your email. Sorry if this sounds arguementative.

Kimi

In a message dated 8/8/2005 3:00:12 P.M. Eastern Daylight Time,

angie@... writes:

What I mean is this ....

I have NEVER bought any assistive device (beyond health reasons) in order to

make me fit in or make it easier for me to socialize with alledged friends.

I

base getting items based on my needs, physical ones mainly.

I NEVER viewed myself as " disabled " simply because I don't " perform " daily

activities that most of us take for granted. So for me, I'd buy an electric

wheelchair that may make my physical woes less cumbersome, but I don't look

at trying to achieve a higher height just to look someone else in the eye,

or

to make it easier on them to hug me or to climb stairs. My main drive is to

(not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE myself

....

I don't walk, so I go for rolling on wheels, If I did stand, I'd be only a

tad taller than 5.1, so no need for me to exceed my 48 " height sitting down.

My w/c is adding to my personal gain not to promise an alternative that

doesn't even have an existing role in my life now. For example, raising me

costs more than to lower a desk, raising me to the kitchen counter is no

good

if the stupid cupboard doors are in the way anyhow; so clearing out them

only

reduces storage space and increases kitchen remodelling costs....I could go

on ... but it's enough said.

Again, it's not the inside that would change, it's the outside ... how

society

looks at you. I have no qualms about how they see me. I am in an electric

wheelchair ... nothing more.

[Guest guest]

PurplGurl3 (sorry don't know your name),

You explained part of what I was thinking WAY better. I agree a better IBOT

would be nice, b/c not every home is easily made WC accessible and older

buildings in our country are exempt from making the building Wc accessible b/c

they are historical.

Thanks,

Kimi

In a message dated 8/8/2005 4:24:44 P.M. Eastern Daylight Time,

PurplGurl3@... writes:

> Again, it's not the inside that would change, it's the outside ... how

> society

> looks at you. I have no qualms about how they see me. I am in an electric

> wheelchair ... nothing more.

Society would view me differently in a different wheelchair? I'm not sure

about that, and it's certainly not why I would want a newer, cooler

wheelchair. I

want a chair that expands and enhances my abilities. My chair and other

assistive devices should help me to perform any tasks that my disability

makes

difficult. And yes, my height does make a lot of tasks difficult. With my

seat

elevator, I can do so much more. And that includes everything from reaching

high

elevator buttons and shelves in my kitchen, to seeing over people's heads

and

having easier conversations in a crowd. The whole point of any assistive

device is to compensate for the disability.

> The only big thing I have about " advanced technology " is that it too is

> based

> on able-bodied facts. I kinda like the iBOT for it's curb climbing, sand

> trodding, elevation and speed, but the stair climbing scares the heck out

of

>

> me. I cannot see how they deem that to be safe? I picture myself, in a

> public

> place, going up stairs only to have an inconsiderate jerk push past and

> knock

> me down .... tumble, tumble, WHACK! I break my arms, legs, or neck or die!

> So

> why not reduce the risk by rallying for a public elevator? Why is it such

a

> big deal to enable us wheelies to climb like able-bodied people? It

doesn't

> make us any healthier?

I wouldn't want to try the current iBOT's stair climbing either. But

supposing they come out with a more perfected version eventually. Why

wouldn't I want

to be able to climb stairs? Ramps and elevators are nice, but the fact is, a

large part of the world doesn't have them. I want to be able to go to my

friends' houses. I want to go to the local house parties. I want to go

upstairs in

my family's house. Next year I'm going to be teaching in public schools, and

I

want to be able to visit my students' homes. I want to travel Europe and go

inside all the historic buildings, cathedrals, castles, etc. Yeah, it's

probably

cheaper to adapt my own home than to get a fancy chair. But the fancy chair

opens up the entire world to me. If the technology were available, what's

wrong

with wanting that?

[Guest guest]

Angie,

Jeni's post says mostly what I was going to say. I too cannot believe " I

have no severe, bad recollection or memory of bad times with SMA. I can't say

that I hate SMA because I was raised with the attitude/mind set that enable

me to cope without blaming SMA for my woes; be it becoming sick or not being

able to go out and play. "

So u r saying u had the *perfect* upbringing for a DA person. Again I think

you only remember the " merry " times and your coping skill is the denial that

SMA does cause your inabilities.

Kimi

In a message dated 8/8/2005 5:42:19 P.M. Eastern Daylight Time,

mom2armybratz@... writes:

No offense but I have to say I'm not buying this. I just can't believe that

as a child you never once cried because all of your friends could do

something that you couldn't. I can't believe that you had *perfect* friends who

always made sure to include you in activities. Most small children are just not

capable of that kind of response. Also, during all of your hospitalizations you

never had to go through something slightly painful and thought that if it

weren't for your SMA that you wouldn't be there?

I can believe that as an adult you've moved past associating SMA with all

things negative, but I don't believe that you were born so enlightened.

Hugs

Jeni

[Guest guest]

e,

I totally agree w/you. If you don't ever see that SMA is changing and

affecting your life than you are in denial.

Kimi

In a message dated 8/8/2005 5:45:31 P.M. Eastern Daylight Time,

PurplGurl3@... writes:

And I think that's assuming an awful lot. I'm a very realistic person. If I

take the time to think about the limits SMA puts in my life, then yes, I

hate

it. When I want to go out and do something, and SMA prevents me, I hate

that.

And I think that's an acceptable way to feel. It doesn't mean that I sit

around

drowning in self-pity. I'm a generally happy person, I like my life for the

most part, and I stay busy trying to accomplish a lot of things. I have good

friends who don't treat me differently because of my disability. I have a

good

family. Life is good. But I'm still aware that SMA sometimes inconveniences

the

people around me, and I wish it didn't. I'm very aware that SMA makes simple

tasks ten times harder for me, and I don't like it. I don't have to like it.

I

just have to deal with it and allow other things to make me happy.

It's very possible to do more than just cope, but to be a happy,

well-adjusted person, and yet still resent the extra challenges of SMA. It's

perfectly

healthy.

-e

[Guest guest]

What I mean is this ....

I have NEVER bought any assistive device (beyond health reasons) in order to

make me fit in or make it easier for me to socialize with alledged friends. I

base getting items based on my needs, physical ones mainly.

I NEVER viewed myself as " disabled " simply because I don't " perform " daily

activities that most of us take for granted. So for me, I'd buy an electric

wheelchair that may make my physical woes less cumbersome, but I don't look

at trying to achieve a higher height just to look someone else in the eye, or

to make it easier on them to hug me or to climb stairs. My main drive is to

(not sure how to spell this word, so go by sound) X-SCENT-CHEW-ATE myself ...

I don't walk, so I go for rolling on wheels, If I did stand, I'd be only a

tad taller than 5.1, so no need for me to exceed my 48 " height sitting down.

My w/c is adding to my personal gain not to promise an alternative that

doesn't even have an existing role in my life now. For example, raising me

costs more than to lower a desk, raising me to the kitchen counter is no good

if the stupid cupboard doors are in the way anyhow; so clearing out them only

reduces storage space and increases kitchen remodelling costs....I could go

on ... but it's enough said.

Again, it's not the inside that would change, it's the outside ... how society

looks at you. I have no qualms about how they see me. I am in an electric

wheelchair ... nothing more.

The only big thing I have about " advanced technology " is that it too is based

on able-bodied facts. I kinda like the iBOT for it's curb climbing, sand

trodding, elevation and speed, but the stair climbing scares the heck out of

me. I cannot see how they deem that to be safe? I picture myself, in a public

place, going up stairs only to have an inconsiderate jerk push past and knock

me down .... tumble, tumble, WHACK! I break my arms, legs, or neck or die! So

why not reduce the risk by rallying for a public elevator? Why is it such a

big deal to enable us wheelies to climb like able-bodied people? It doesn't

make us any healthier?

By challenging the environment and make it change you enable a greater

population easier access and not making them go line the pockets of money

hungry gadget manufacturers.

Angie

On 2005.08.07 14:56, PurplGurl3@... wrote:

> In a message dated 8/7/2005 10:13:30 AM Mountain Daylight Time,

>

> angie@... writes:

> > I am not knocking the independence the iBOTS offer, but once again, it's

> > forcing us to change ourselves as individuals and not making a more

> > general,

> >

> > acceptable environmental change instead.

>

> I'm not completely sure if the iBOT would be practical for me or not. But

> supposing it is everything they say it is... How would that force me to

> change myself as an individual? Changing my wheelchair is not changing who

> I am. I still accept that I'm a disabled person who needs extra help to

> achieve independence. Switching to the most modern and empowering

> technology is the practical thing to do. It doesn't change me; all it says

> about me is that I'm doing everything I can to have the most independence

> as possible.

>

> -e

>

>

>

[Guest guest]

In a message dated 8/8/2005 4:43:13 PM Mountain Daylight Time,

Ksmile96@... writes:

> I totally agree w/you. If you don't ever see that SMA is changing and

> affecting your life than you are in denial.

I was trying to avoid the word " denial " because it didn't sound nice, but

yes, that's exactly what I was getting at.

-e

[Guest guest]

Well, when you think about it, I wasn't referring to the physical care side of

things. It was the emotional side ... my parents were excellent mind readers.

They had 24 years of first hand knowledge about my eyebrows up's and down's,

my frown, my silence and my " horns " ... it was that I had to put into words

that made it tuff for me. I should have read more on how men and women think

differently to make the transition easier.

As for my neighbourhood friends .... when they ran, I was pushed or I just did

something else with the ones that didn't run. Besides, as girls, we played

mostly with our dolls, in the backyards, picnic tables or in our bedrooms;

especially during the winter months.

I am not sure I saw it as a " Priviledge " (sounds too " pro-coat-chee-ous " ), but

I suppose they saw something in me that they liked and it was good enough for

them too. I also never said " I hated it when my friends had to push me ... " ;

my words were:

> The only time I felt my disability held back my friends was if my

> batteries failed. They hated pushing me in it because it was heavier than

> my manual. Depending what we had planned, my manual would tag along just

> in case. By the

> time high school rolls around the batteries soon outlasted me!

>

THEY hated it, not me.

Angie

On 2005.08.07 18:15, Ksmile96@... wrote:

> Angie,

> I was almost sure a few threads ago, u stated how u were hesitant for your

> husband to marry u b/c he didn't know what he was fully getting himself

> into, and he had to reassure you. That's the kinda guilt I'm talking

> about. Obv iously back when u were little electric w/c r nothing like now,

> and did not have the speed and battery power they have now. You said u

> played w/the AB neighborhood kids, how did u keep up w/them when they were

> running and biking? Did that make u feel left out or if they gave up those

> things just to play w/u, u didn't feel bad? Or r u saying it was a

> privilegde that they got to stop and stay to play w/u b/c that gave them

> variety in their lives?? Your last comment how u hated when ur friends

> had to push u when ur batteries failed shows u did have some guilt to me.

> Kimi

>

>

>

>

>

> In a message dated 8/7/2005 11:56:57 A.M. Eastern Daylight Time,

> angie@... writes:

>

> Honestly, no.

>

> When I was a kid, I had two circles of friends; school friends and home

> friends. My school friends were all disabled because I had no w/c

> accessible grade schools for me to attend. Seeing such diversity in

> abilities made me feel I had the world in my pocket. I ended up helping

> them more often and we had a lot in common, except some didn't live at

> home with family.

>

> My home friends were mainly those kids my sisters went to school with and

> those on our streets. Most of us had similar upbringing so house/home

> rules were easy to handle. We only had one " rich " friend who got more than

> the rest

> of us, but he shared his stuff with me only. My mom said he had a crush on

> me

> (can't see how ... I was quite the chubby kid back then).

>

> The only time I felt my disability held back my friends was if my

> batteries failed. They hated pushing me in it because it was heavier than

> my manual. Depending what we had planned, my manual would tag along just

> in case. By the

> time high school rolls around the batteries soon outlasted me!

>

> Angie

>

>

>

>

>

>

[Guest guest]

Hmm I guess I'm not nice then, sorry...hehe . I'm just a say it like it

is kinda gal

Kimi

In a message dated 8/8/2005 7:14:04 P.M. Eastern Daylight Time,

PurplGurl3@... writes:

I was trying to avoid the word " denial " because it didn't sound nice, but

yes, that's exactly what I was getting at.

-e

[Guest guest]

In a message dated 8/8/2005 4:40:18 PM Mountain Daylight Time, angie@...

writes:

> Besides, what good does it do? It can't be undone or changed so I was

> taught

> to move on and invent another way to get what I want. If I need help, I ask.

>

> I have not had to switch to something else if I didn't get what I wanted,

> except for winning the lottery, I've been lucky I had set attainable goals

> never once blaming SMA for making me choose it either. I suppose I was

> raised

> to be realistic enough.

Of course it can't be changed, and that's why no, it's not healthy to dwell

on the SMA and feel sorry for yourself. But there are a lot of things in life

that I can't change--natural disasters, poverty, terrorism, war, illness, loss

of loved ones, etc. That doesn't mean I don't feel bad about them now and

then. It's only natural. It's ok to be disappointed when things are more

difficult

than I want them to be. It's ok to be annoyed at health problems or physical

barriers. And then, we move on, like you said. That's just how life is.

-e