Hidden Disabilities - , was Re: Re: massage therapist/Jen; Mike; list

January 10, 2004

> 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.

You touched on a HUGE issue with this. And one that the disability

community has tried to address for years - hidden disabilities. We have an

entire column devoted to hidden disability in EDS Today. The fact that a

person can walk and appear normal means nothing in terms of whether or not

they are disabled, but the perception is that they are okay.

Our local King 5 news did a story about stolen parking placards several

years ago with the intent of making people aware of the problem of abuse of

our parking laws. They showed footage of healthy people using stolen

placards, including someone on Seattle City Council! They did not address

the issue of hidden disabilities at all. That was at 5 pm, and I was irate,

as were others in the local EDS community. What was meant to be helpful to

the disability community was potentially damaging to those with hidden

disabilities. I fired off a fax to the newsroom and explained about hidden

disabilities. Much to the credit of King 5, when the story aired at 11 pm,

Jean Enerson read the important text of my message verbatim at the end of

the story.

Unfortunately, the damage was already done. The next week, a group of

students at a Christian college broke into the vehicle of one of our support

group members and stole his placard. When he reported the theft to the

dean, the dean told him, " well, I am sure that they meant well as you

obviously don't really look disabled and they wanted to stop you from

abusing the parking laws. " Wrong answer!!

People with EDS have long had to cope with the public perception of them as

non-disabled because we look healthy. Each of us has our own way of dealing

with the problem. Some always carry a cane with them when using disabled

parking so that people leave them alone. Others chose to educate people

that confront them. Still others struggle with what to do and are afraid of

using the privileges to which they are entitled for fear of public scrutiny.

How we deal with it has much to do with our confidence in ourselves and our

acceptance of our diagnosis.

You can read the full series of articles on hidden disabilities online at

http://www.edstoday.org/newsletter/columns/hidden.htm

-Barb

January 10, 2004

My pain dr gives me a handout at each appt. The one he gave me on Thursday was

" The nature of Chronic Pain "

It is very well written, and full of great info. One thing he talks about is

disability.

He says (not verbatim)

Ask yourself this: Who is more disabled? Person 1 is a quadriplegic who needs

an aide to help him with his most basic bodily care. Nevertheless this person

maintains a job and has a happy family life. Person 2 is healthy except for

chronic back pain, has not worked for 10 years, has trouble performing everyday

tasks because of his pain, and is angry at the world for his lot in life.

Person 1 has a much more severe injury and is physically impaired. Person 2 is

much more disabled.

Hearing your story on the guy whose car was broken into makes me fuming mad!

The general public is ignorant. To all kinds of things. And unfortunately, the

dishonest people of the world are mostly to blame. But, our media is as well.

They focus on the bad in everything, and never tell many stories unless there is

something about it that makes it gruesome or against the law.

I saw a show on tv about that very thing. When asked, a news photographer had 2

choices of stories to photograph. A baby in a car wreck who was seriously

injured, or something more benign - can't remember what the other was, but it

was a bigger news story that would have more follow up stories about it.

Of course, he chose the baby, and tried to get a picture of the poor soul.

It's just disgusting.

Unfortunately, most people get their news and information from tv. I don't know

why there can't be SOMEONE out there who would concentrate on trying to inform

the public on something like explaining the nature of disabled people.

Oh, I don't know, I'm just so mad right now I can't even think straight! Can't

get my words out right.

Maybe it's cause I have a sinus infection, and my head feels like it's in a fish

bowl. Haven't been able to think straight for a couple days!

But, I think you know what I am trying to say!

January 10, 2004