Re: Re: To go or not to go? Carry me or not?

May 2, 2005

This I understand fully, too. These days, I refuse to be carried. But it has

been a long road and it takes a tremendous amount of courage to do it. To stand

up for your rights (metaphorically) is not easy. You have to be strong and get

the support of family, friends and other disabled people before you can do it.

Alone it is not easy.

many smiles

Taya

Re: " To go or not to go? Carry me or not? "

I just realized how we might sound to some. Now, I refuse to go

through a back door anywhere, skip inaccessible functions, places,

etc. But I'm older and that was a battle hard fought. I was carried

up a steep flight of stairs EVERY DAY of high school for class,

carried up 10 steps to the stage at high school graduation (had to

give my speech), and didn't do the processional at my college

graduation, just sat and waited for my class. Those were my choices

if I wanted to participate. Now things are better most places.

Each person has to choose each time whether an activity is worth the

hassle it takes.

Some non-disabled people never do understand. Their problem.

To MJ, this is the drinking straw lady saying GO FOR IT ALL. You are

doing FANTASTIC!

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May 2, 2005

Heh my chair is just about 400 lbs with my vent and two vent batteries. 500 with

me in it

Re: " To go or not to go? Carry me or not? "

I don't know about y'all but my w/c weighs 300 lbs w/o me in it.

These chairs are not meant to be carried...it's not safe or practical.

L

May 3, 2005

In a message dated 5/3/2005 7:53:30 P.M. Pacific Standard Time,

mom2armybratz@... writes:

I don't make h go ANYWHERE that is inaccessible. She's even missed

several birthday parties (for close friends) because they were held at places

like

the skating rink. Granted, we held h's party there this year but only

because we rented the entire building so she could get on the skate floor. This

really irritates a lot of our friends and even some family members who feel

that h should " get used to doing things that she doesn't enjoy when it is

important to others " . Hmmmm..... What is y'alls take on this? I kind of feel

like it's ridiculous to FORCE her to go and be miserable watching other

children have fun. I think it should be her choice. Am I spoiling her here?

Gotta run.... It's late and we JUST got done with homework. BEDTIME!!!!!

Of course it should be her choice, I can't believe anybody would have the

nerve to get upset about that. I always feel like if it's important to somebody

that I'm there, then they'll make it accessible, assuming it's at all

possible. If they don't bother, then obviously it didn't really mean that much

to

them, which is fine, I don't have to be included in everything. And when it is

important to me, I'll deal with less than ideal circumstances. But no, she

should not be forced to go to a social event that wasn't designed to include

her anyway.

I remember when I was a kid, a lot of kids would adapt their birthday plans

just so that I could come and be included. It often surprised their parents.

I didn't realize it at the time, but I must have been popular back in

elementary school!

~e

May 3, 2005

I don't make h go ANYWHERE that is inaccessible. She's even missed several

birthday parties (for close friends) because they were held at places like the

skating rink. Granted, we held h's party there this year but only because we

rented the entire building so she could get on the skate floor. This really

irritates a lot of our friends and even some family members who feel that h

should " get used to doing things that she doesn't enjoy when it is important to

others " . Hmmmm..... What is y'alls take on this? I kind of feel like it's

ridiculous to FORCE her to go and be miserable watching other children have fun.

I think it should be her choice. Am I spoiling her here?

Gotta run.... It's late and we JUST got done with homework. BEDTIME!!!!!

Love and Hugs

Jeni

May 4, 2005

When I was younger I'd go to sleepovers and even bring the Bipap, as long as

the parents of my friend were comfy w/that. If they weren't I'd call my

parents to come get me when everyone was going to bed or I was too tired. I've

said this before, but I too was carried around ALOT in HS. Especially when

everybody turned 16, and hanging out at each others houses was not " cool. "

Cruising the local strip, getting lost in the hills of our hick town, and

scaring

each other at " spook lane " were the activities of choice and of course parties.

They would just lug me into the back of their cars, or sometimes I'd sit on

the floor in the front seat with my head in btw the passengers legs. I was very

tiny and lightweight. They would take me to diners, parties, etc., and altho

I couldn't sit up I'd lay in booths, lay on a blanket at outside parties in

the summer, and lay on couches at indoor parties. People were good at keeping

me company, getting me drinks and food, and would move me if a crowd began to

assemble somewhere. My motto was if its possible then go for it. I wanted to

be involved in normal activities, and I'm lucky I have an unprotective mother

and also a sister close in age. Ever since elem school my friends were very

involved and interested in my care. As my disease progressed my manual wc was

of no help, so being carried was my only option. Since college and grad

school, I have my adapted van that almost all my caregivers and friends drive,

and

I pay a monthly payment to my parents towards it for the next 10 yrs! Gas is

also my responsibility. Pray for lower gas prices, its now about $70 to fill

my tank. Anyways I say if your child wants to go, and its possible, then let

him/her. Just my .02 cents.

Kimi

PS on another topic kind of related to Jodi's statement " A lot of the time my

friends tell me " oh, you just do everything, it's great and nothing stops

you " and I tell them that it's not as

easy as it looks and that it does take a lot of preparing to do some of the

things I do. " There was a phase were all my friends thought having a

wc/disability was " cool. " I would remind them that it took a lot to get me

where I

was, and reminded them of all the hospitalizations. They had this idea that

being disabled meant u got a cool toy to ride in. Then I'd say and finding a

boy

who can accept you and ur disability wasn't as easy as it looked, then came

the phase where my gf's would ask their current bf's at the time would u still

love me if I became disabled in an accident. It started many interesting

convos.

In a message dated 5/4/2005 6:03:42 AM Eastern Daylight Time, lenekt@...

writes:

I used to go everywhere! If it was inaccessible I'd be carried. Now,

I tend to weigh if it is worth the inconvenience (to me or to the

ones who have to carry me)... Sometimes the problems of going

outweighs the pleasures - sometimes it's the other way around. My

power chair is practically impossible to carry, so I bring a

standard chain when necessary, but it leaves me so immobile, thus, I

try to avoid it as much as possible...

A lot of the time my friends tell me " oh, you just do everything,

it's great and nothing stops you " and I tell them that it's not as

easy as it looks and that it does take a lot of preparing to do some

of the things I do. I feel that it is important for them to know

that in order to truly know me! And I find that they notice

accessible places more and more because of it. Like when my best

friend started dating her (now) fiancé and went to his apartment for

the first time. It was in a building with a lift and she commented

on it: " hey your building has a life! " and he thought she was just

plain lazy until she explained... Then she called me and said " I

think we're keeping this one - his place has a lift. " Hah hah!!! :-)

Now she has moved in with him and I can drop by whenever I feel like

it, because I don't need to be carried...

Entering through the backdoors of public places is something I just

have to accept because in Denmark a lot of the places are not

accessible. It's not perfect, but I find that it beats not entering

at all :-)

/Lene

May 4, 2005

In a message dated 5/4/2005 5:15:44 A.M. Pacific Standard Time,

Ksmile96@... writes:

Then I'd say and finding a boy

who can accept you and ur disability wasn't as easy as it looked, then came

the phase where my gf's would ask their current bf's at the time would u

still

love me if I became disabled in an accident. It started many interesting

convos.

Sound like you had some awesome friends. And I bet that did start some

interesting conversations! I have a roommate in a wheelchair, and she met her

boyfriend online. They'd been dating for something like 8 months when she

finally

told him that she used a wheelchair. (He lives in England, so they hadn't

met in person yet.) He actually believes her story that she just forgot to

mention it before, but she and I both know that's not true. I know it has

nothing

to do with me, but the whole story just really irritates me! That was so

deceptive. I'm an incredibly honest person and I would never keep that kind of

secret for so long. It's like tricking somebody into falling in love. I have to

deal with the fact that every guy's first impression of me is as a person in

a wheelchair. It seems like cheating that she worked a way around that.

Neglecting to mention it online for a few days is one thing, but for so many

months? That's deception, yet it doesn't seem to bother either my roommate or

her

bf.

Somehow my thoughts just started going towards this whole story. Am I

strange for being bothered by it? Do other people think that what she did was

wrong?

~e

May 4, 2005

Jeni,

That is a hard question to answer, at least for me, only because I did go

through the experience of going places I couldn't get into easily or missed

out on kids parties or had to watch from afar. Although it sounds so sad, I

did get some enjoyment just by being nearby. I can remember my friends

bringing fun to me like pans of sand and or water to muck around in while

they swam. I had an overactive imagination that enabled me to see and feel

fun where ever i went.

The big gray area is whether or not your values/opinions/beliefs are

spoil-like material. I was told, including my non-sma sisters that we can't

always have things our way when others are involved. Maybe this family rule

made it easier to accept, but I know I didn't always behave like it did. What

kid wouldn't cry if they feel they're missing out on fun?

Sometimes too much accomodation isn't good either. It's a fine line between

being able to do the " right " thing versus going " above and beyond " or " to

climb every mountain or move it " . I am a strong believer and supporter for

equality among all humans. To be this way means that I will not make demands,

I make requests. If it involves my health, I make absolutely no compromises,

but I will give a little if it means not " rocking the social/family/friend

boat " .

Maybe when one of h's friends have a birthday bash she could ask the

birthday kid to come to her house, before or after the b-day party, and have

a private fun b-day day with just the b-day kid. I did when I was a kid her

age. They make great memories too!

Does h have siblings? Just curious?

Angie

On 2005.05.03 22:48, Jenifer Woody wrote:

> I don't make h go ANYWHERE that is inaccessible. She's even missed

> several birthday parties (for close friends) because they were held at

> places like the skating rink. Granted, we held h's party there this

> year but only because we rented the entire building so she could get on the

> skate floor. This really irritates a lot of our friends and even some

> family members who feel that h should " get used to doing things that

> she doesn't enjoy when it is important to others " . Hmmmm..... What is

> y'alls take on this? I kind of feel like it's ridiculous to FORCE her to go

> and be miserable watching other children have fun. I think it should be her

> choice. Am I spoiling her here? Gotta run.... It's late and we JUST got

> done with homework. BEDTIME!!!!!

>

> Love and Hugs

> Jeni

>

May 4, 2005

In a message dated 5/4/2005 11:55:50 A.M. Pacific Standard Time,

PurplGurl3@... writes:

Somehow my thoughts just started going towards this whole story. Am I

strange for being bothered by it? Do other people think that what she did

was wrong?

No, I don't think you're strange to be bothered by this. 8 months was way

too long to wait to tell him. What was she afraid of? I can totally understand

waiting a few days. That kind of information can overwhelm someone right out

the gate but yea, 8 months sounds a bit much.

May 4, 2005

I remember as a kid being hauled up and down flights of stairs. Thank god I was

skinny and didn't get dropped or contribute to someone getting a hernia or

something.

What really pisses me off were two situations where people should've known

better.

Holiday parties and recreation events sponsored by orgs for pwds (mda, easter

seals, handi-kids, etc) being held in places with stairs! (argh!!).

The scariest for me was a Christmas party held at an old church (new england

style chapel strait out of Peyton Place-ya picture it?) with a long steep flight

of stairs. Me and my sister were carried then held by strangers while our wcs

were hauled up.

The people who were holding us meant all the best and their hearts, I'm sure,

were in the right place, but strangers are scary to a six yr old.

My sister had this happening after a spinal fusion. I cringe to think about it.

I wish my parents had the ability to say no and drive away and take us to

Mcs instead. Instead of letting us be put at risk of an injury.

My other example was summer camp where well meaning college hippies (I'm showing

my age here) would insist on taking us to places that were unaccessible. They

told us it was part of liberating us to haul us in and out. I swear they would

seek out places with the most steps possible.

They really beleived they were theraputically helping when in reality they were

most likely contributing to post traumatic stress disorders. If any of us so

much as fliched, were scolded and harassed for not 'trying hard enough' and 'not

trusting enough'.

I've successfully refused any 'crip crow' (aka-being segregated to 2nd class

service because of disability- as in 'Jim crow' laws for people of color in the

old south) situations in my adult life.

I also refuse to put life and limb at risk for other peoples bad judgement and

planning.

A couple of years ago a friend of mine had a brand new wheelchair and met

friends at a hole in the wall nightclub and was carried up a flight of stairs.

A the end of th night, drunken do gooders dropped his new chair down all of the

stairs and totaled it. Thankfully my friend wasn't in it at the time. He got

another chair but I told him: " Where you going to get another body if it were you

that got whoopsied down the stairs? "

It really makes me feel good to read all of the posts on this subject. We are

making strides in the world when we stick up for our own dignity and safety. It

also paves the way for future pwds.

Jenifer Woody <mom2armybratz@...> wrote: