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Wednesday, February 17, 2010

Information Disability - Guest Discussion

I strongly believe that deaf-blindness is an information
disability. This is because people who are deaf-blind often have
difficulty access information about the world around them. This
can refer to news and announcements or might mean learning about
what is going on in one's own surrounding environment.

Think about it. We can't read the newspaper. We can't watch
television. We can't hear the radio. We can't hear people as
they talk to each other. We can't see what they are doing. We
don't always know who is in the room with us. Most people don't
know how to sign. There's no such thing as a 24-7 interpreter.
We don't know what the weather is like. Internet sites are
often inaccessible. We lack the funds to buy all the latest
technology that will help in the above situations.

Oh, yes. Deaf-blindness is definitely an information disability.

You may be thinking that we must have people there who can tell
us what we need to know. Well, it isn't always that simple.
Even when we are married or have close friends and family around,
communication can be difficult. not everyone is willing to do
what they need to help us best. Just because they are related to
us, doesn't mean they really understand what we need.

So we continue to lack for information and we continue to
struggle. it goes on and on.

My friend Holly is now completely deaf-blind after recently
having a tumor removed from her auditory nerve. As her hearing
worsened over the past year, she had a hard time getting her
family to adjust to her new communication needs. They still
wanted to use speech. Now that is no longer an option.

A mutual friend told Holly, "Everything happens for a reason.
At least now your family has to learn how to communicate
better."

This comment set off an interesting discussion.

Holly: My family doesn't HAVE to improve on communication.  There
is a lot going on that no one tells me about.  My husband tells
me something has happened and I am like "what? It "did?  And he
gets mad because he told mom or dad to tell me and they said they
would.  (shrug)

My husband is doing well on communication.  I speak to him and
he fingerspells to me.  We could talk using Windows Messenger
if we wanted to, but we'd rather talk in person.  I want the
touch. 

Scott: Welcome to the world of tactile sign users!

A lot of us get left out of everything. I've got relatives that
continue to shout in my face after being told for 23 years that I
can't understand them anymore.

Nobody wants to learn sign. My folks can do the alphabet; that's
about it for signing family members. My wife acts as a terp for
me sometimes, but I try not to lean on her. And with my hands
dying now, I can barely understand her signing anymore.

How does one keep from going INSANE?   Keep pushing your family
and friends to do tactile with you. If you don't push them now,
they will assume it isn't vital and probably will never take it
seriously.

I have a chainsaw if you need to stress the point. It's the
cutting edge of DB advocacy.   Holly: Ha! I passed insanity
about a year ago.

It really is frustrating being left out so much. To literally
have no clue something just happened. Find out a few hours later
and you sit there like an idiot. You have no idea what they are
talking about.

Then they say "oh we did that back at the airport... I thought
your mom told you. I told her to."

The problem is people pick and choose what they want to tell
you. If they "think" you don't need to know it, then they don't
tell you.

At least when I had a little bit of hearing I could hear people
talking and could ask them what was happening. I couldn't
understand them, but I knew they were doing something there.
Now, I'm just clueless. Makes me feel stupid when I'm not keyed
in to the world.

Things will improve though, hopefully.

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