[blindkid] Fwd: A Unique Disability

adrijana prokopenko adrijana.prokopenko at gmail.com
Sun Sep 24 19:20:57 UTC 2017


Yes, we constantly talk about Hellen Keler, but seems as we are
foergetting the deafblind population nowadays. Not much is done in
this regard, especially in developing and third world countries. Most
deafblind people sit at home not doing much and not having proper
education and support.

On 9/24/17, Carol Castellano via blindkid <blindkid at nfbnet.org> wrote:
> Yes!  One of my daughter's best friends is deafblind and they communicate
> in braille via their BrailleNotes.  It's lovely to see!
>
> Carol
>
> Carol Castellano
> Parents of Blind Children-NJ
> National Organization of Parents of Blind Children
> 973-377-0976
> carol_castellano at verizon.net
> www.blindchildren.org
> www.nopbc.org
>
> On Sun, Sep 24, 2017 at 2:56 PM, Lydia Anne Schuck via blindkid <
> blindkid at nfbnet.org> wrote:
>
>> And braille is so vital to a person who has DeafBlindness. If you can read
>> braille through a refreshable display device, you can connect with family
>> and the wide world through the internet and email. Another reason to
>> advocate for braille. Lydia
>>
>> ________________________________
>> From: blindkid <blindkid-bounces at nfbnet.org> on behalf of Carol
>> Castellano via blindkid <blindkid at nfbnet.org>
>> Sent: Saturday, September 23, 2017 9:59:22 PM
>> To: Blind Kid Mailing List, (for parents of blind children)
>> Cc: Carol Castellano
>> Subject: Re: [blindkid] Fwd: A Unique Disability
>>
>> Thanks for posting, Eric.  This is important information.
>>
>> I think sometimes deafblind people and their families feel isolated--not
>> quite part of the blind community and not quite part of the deaf
>> community.  As the writer said, the tricks that work for the one
>> disability
>> are not usable for the other.  We should do what we can to welcome and get
>> to know deafblind members of NFB.  We who advocate for other families
>> should learn what we can about the tools and techniques deafblind people
>> use.  Just as with our plain blind students, whenever a deafblind student
>> succeeds, the bottom line is raised for ALL our kids.
>>
>> Carol
>>
>> Carol Castellano
>> Parents of Blind Children-NJ
>> National Organization of Parents of Blind Children
>> 973-377-0976
>> carol_castellano at verizon.net
>> www.blindchildren.org<http://www.blindchildren.org>
>> www.nopbc.org<http://www.nopbc.org>
>>
>> On Sat, Sep 23, 2017 at 2:13 PM, DrV via blindkid <blindkid at nfbnet.org>
>> wrote:
>>
>> > Hi All,
>> > This came across the NFB of CA Listserv & I wanted to share it.
>> > I found it to be powerful, thought-provoking, & inspiring.
>> > Peace,
>> > Eric V
>> >
>> > Begin forwarded message:
>> >
>> > > From: nancy Lynn via NFBC-Info <nfbc-info at nfbnet.org>
>> > > Date: September 23, 2017 at 10:27:57 PDT
>> > > Reply-To: NFB of California List <nfbc-info at nfbnet.org>
>> > >
>> > > 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
>> > >
>> > >
>> > > _______________________________________________
>> > > NFBC-Info mailing list
>> > > NFBC-Info at nfbnet.org
>> > > http://nfbnet.org/mailman/listinfo/nfbc-info_nfbnet.org
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>> > NFBC-Info:
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>> > icdx1111%40gmail.com
>> > _______________________________________________
>> > blindkid mailing list
>> > blindkid at nfbnet.org
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>> > blindkid:
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>> > carol.joyce.castellano%40gmail.com
>> >
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>> lydia.a.schuck%40wmich.edu
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