Re: Hidden Disabilities -

[Guest guest]

> How lovely!

> Boy Barb, you certainly have some talented parents!

Since you don't know the story, I will mention that Darlene's poem

has had " rather wide " distribution - including being published

in " Chicken Soup for the Unsinkable Soul. " I can't remember how the

editor heard about it, but she did an internet search on the last

name. She came up with one of my cousins in Minnesota and called to

see if my cousin recognized the name (we were still living in

Anchorage, Alaska at the time). At first, she didn't. Then she

thought " wait a minute - I think that's Mike's wife. " At any rate,

I got an urgent phone message to call her. It was urgent because

the publishing deadline was within a week and they needed a written

authorization from Darlene to use it.

> If I have something to do that requires a lot of walking or

standing coming up, I may take you up on your offer.

Please, do not hesitate to borrow or try Barb's wheelchair. I don't

know how long it has been since she has used it, but I have been

down here now for three years and it hasn't been used in that length

of time. At the moment, it is sitting on a shelf in my storage shed,

not doing anybody any good.

>I worry that people will see me get out of my car, get the

wheelcahir out, then get in it. Like, what the heck? Is she trying

to get special privledges? I hate the wasy most people view

others. Like when someone gets in a handicapped parking space, and

they walk away from their car. Most people think that they are ok.

When as we all know too well, that is not always the case.

>

Barb has already sent her own response to this point about hidden

disabilities and the perception of others. From my perspective, I

don't look I have anything wrong either (as long as you ignore the

glazed, semi-psychotic look I sometimes get in crowds). But there

are times, like you said where you are going to be going places like

a mall and you know that you are going to end up hurting. I'm the

same way. And sometimes, I just need to sit down. And I don't

always feel like giving my spot up to someone else. I do not now,

nor have I ever, need to use a wheelchair - but I carry and use a

good adjustable cane all the time. Sometimes I have it with me for

no other reason than the perception issue and sometimes I have it

because I flat out need it. The only thing I haven't been able to

adjust to is having guys hold the door open for me, or like on our

last trip, having someone say " Here, let me do that. " And then

taking my carry-on bag and putting it in the overhead for me.

[Guest guest]

> I can't remember how the editor heard about it...

A member of the CEDA list, Aase Marit Waage from Norway, read the poem and

suggested to mom that she submit the poem to the Chicken Soup people for

" Chicken Soup for the Disabled Soul " . That book was scrapped because there

was an uprising from the disability community that the term " disabled soul "

was inappropriate as one's soul is not disabled, only one's body. By the

time the publishers reworked the concept and began working on " Chicken Soup

for the Unsinkable Soul " my parents had moved and their contact information

submitted for the original publication was no longer valid.

> Please, do not hesitate to borrow or try Barb's wheelchair. I don't

> know how long it has been since she has used it, but I have been

I have not used it since 1997 or 1998 when I got the power chair for school.

I've not used the power chair since 1999 and I don't know if it even works

anymore.

> The only thing I haven't been able to

> adjust to is having guys hold the door open for me, or like on our

> last trip, having someone say " Here, let me do that. " And then

> taking my carry-on bag and putting it in the overhead for me.

As your hair grays, that will be a more common occurrence, I suppose. The

appearance of age gives a perception of decreased ability, regardless of

whether one is actually less able. You, however, like many EDSers appear

younger than you are, which is both an advantage and disadvantage depending

on your viewpoint.

-Barb

[Guest guest]

> I can't remember how the editor heard about it...

A member of the CEDA list, Aase Marit Waage from Norway, read the poem and

suggested to mom that she submit the poem to the Chicken Soup people for

" Chicken Soup for the Disabled Soul " . That book was scrapped because there

was an uprising from the disability community that the term " disabled soul "

was inappropriate as one's soul is not disabled, only one's body. By the

time the publishers reworked the concept and began working on " Chicken Soup

for the Unsinkable Soul " my parents had moved and their contact information

submitted for the original publication was no longer valid.

> Please, do not hesitate to borrow or try Barb's wheelchair. I don't

> know how long it has been since she has used it, but I have been

I have not used it since 1997 or 1998 when I got the power chair for school.

I've not used the power chair since 1999 and I don't know if it even works

anymore.

> The only thing I haven't been able to

> adjust to is having guys hold the door open for me, or like on our

> last trip, having someone say " Here, let me do that. " And then

> taking my carry-on bag and putting it in the overhead for me.

As your hair grays, that will be a more common occurrence, I suppose. The

appearance of age gives a perception of decreased ability, regardless of

whether one is actually less able. You, however, like many EDSers appear

younger than you are, which is both an advantage and disadvantage depending

on your viewpoint.

-Barb