NFBNJ-Seniors] Fw: A Unique Disability

[Janie Degenshein]

This was so profound, I thought it worthy of sharing
Remember those of you on the senior call use your 86,400 seconds each day


-----Original Message----- 
From: nancy Lynn via NFBNJ-Seniors
Sent: Saturday, September 23, 2017 1:27 PM
To: nfbmo list ; NFBC List ; Seniors
Cc: nancy Lynn
Subject: NFBNJ-Seniors] A Unique Disability

I got this from another list and thought I'd share. It gives us much to
think about.
Hello
The author of this brilliant thesis just passed. I wanted to share this with
everyone. I could not have said it any better myself.
A UNIQUE DISABILITY
Deaf-blindness is not simply deafness plus blindness.  It is not two
disabilities put together.  It is one unique disability.  Let me try to
explain.  I am totally blind having lost my vision gradually starting in
childhood.  In young adulthood I started losing my hearing.  With hearing
aids, I am able to understand some speech in a quiet environment.

When I was only blind, I could socialize with many people at a gathering.
Now, at best, I can converse with the individual next to me.

When I was only blind, I could interact with people in a room where the
radio was playing, dishes were clattering and laughter abounded.  Now, with
background noise, I can understand nothing and be alone in a crowd.

When I was only blind, I could sense sadness, joy, anger and agitation by a
person's tone of voice.  That is no longer possible and the loss sometimes
causes misunderstandings.

When I was only blind, I could hear the softest footsteps.  Today, I am
repeatedly startled by the voice of a person who has entered the room with
no forewarning.

When I was only blind, I could identify a person by his/her voice.  Now, I
cannot tell who is talking to me unless I first hear a name.

When I was only blind, I could move quickly with my white cane and, in
familiar surroundings, without it.  Now, I walk cautiously to avoid bumping
people since I cannot hear if others are around or where they might be.

When I was only blind, I could retrieve a dropped item in seconds by hearing
where it fell.  No longer able to localize sound, I must now search on my
hands and knees and even then may not locate the item because it rolled
behind a door or into another room.

When I was only blind, I could stand unsupported in the middle of a room,
bend over, turn sharply and jump out of bed quickly.  This is no longer the
case.  Like many others with hearing loss, I have balance problems, which
prohibit abrupt movements.

When I was only blind, I had no difficulty hearing the ring of the telephone
or doorbell.  Today, even with amplified ringers, my responses are
inconsistent and I must consider using a vibrating alert system.

When I was only blind, talking on the telephone was fun.  Now, even with
hearing aids combined with a volume control phone, some words are missed and
misunderstandings occur.  Sometimes I use a Braille-type telephone, which is
slower and does not convey the emotional nuances of the voice.

When I was only blind, I spent hours listening to "talking books".  Most
voices now sound muffled.

When I was only blind, my husband and I enjoyed movies; he provided an
occasional description.  Movies are confusing and no longer pleasurable.

When I was only blind, life had minimal stress.  Now, piecing together bits
of information, localizing difficulties, balance problems,
misunderstandings, attitudes of others and unpredictable drops in hearing
increase daily stress and fatigue.

The list of challenges is equally long for individuals who are deaf and have
lost or are losing vision.  Deaf people rely on their vision to compensate
for their hearing loss.  Blind people use their hearing to compensate for
their sight loss.  Deaf-blind people are only able to compensate for the
loss of both sight and hearing by learning deaf-blind specific adaptations
that focus on developing and integrating touch, taste, smell, kinesthesia
and any remaining vision or hearing.

"When I acknowledged the need and learned new ways of doing old things, my
splintered pieces combined into a complete, though narrowed, whole.  I
rejoice once again in being able -- differently able."

Ruth Silver
1931-2017, leaves her brilliant thesis


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