[blindkid] Fwd: A Unique Disability

Carol Castellano carol.joyce.castellano at gmail.com
Sun Sep 24 19:17:56 UTC 2017


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
> > _______________________________________________
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> > carol.joyce.castellano%40gmail.com
> >
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> lydia.a.schuck%40wmich.edu
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