Deaf-Blind Issues

Regretably, I don't have a lot of information about Deaf-Blind issues. My main research project involves cultural Deaf and I haven't had time to explore Deaf-Blind topics. Many people have kindly encouraged me to look into the connection andI promise to do so in the future.

Many hearing people may not realize that there is a large Deaf-Blind community. Some of the congenital, pediatric, and maternal syndromes that cause deafness can also cause blindness. In particular, Usher's Syndrome causes a child to be born deaf and then progressively lose sight after puberty. Often, the child will learn ASL and be part of the Deaf community until the loss of eyesight puts him/her into the Deaf-Blind community.

If a Deaf-Blind person in the United States understands sign language (ASL/PSE/MCE), then they can communicate with other people using a tactile form of ASL. The Deaf-Blind person signs ("speaks") normally, but when s/he wants to receive ("listen") s/he holds gently the hands of the signer. People who were not part of the Deaf community before going blind may use a reduced sign vocabulary, signs for clarity, or greater use of finger spelling.

In Japan, I noticed a very different form of tactile communication. A Japanese woman invented a system where one hand's fingers "spells" out the vowels (for example, thumb could be "a", index="e") and the other hand spells out the consonants. Since Japanese has only 5 vowels and 5 major consonants (and some modifiers, "-n", and misc.), you use this system much like playing a piano. The signer/speaker would put his/her hands on top of the listener's and play fingers. This system apparently works very well and takes only a few minutes for even naive hearing people to learn.

However, the Deaf-Blind people that I have met so far in Japan have mostly been Usher-type, and so they were part of the Deaf community before becoming Deaf-Blind. These people communicate using tactile-JSL (Japanese Sign Language) -- and in the case of one man in my local area, tactile-ASL when communicating with this "foreign" anthropologist.

While some devices intended for Deaf people may be used without modification by Deaf-Blind, such as vibrating clocks, pagers, etc.; and some devices may be used with modification such as a TTY with a braille output/keyboard; some devices cannot such as visual smoke detectors.

I don't have much information about Deaf-Blind issues. If you have more information, please let me know. Thanks! My e-mail address is . Click here to go back up to Karen's Deaf resource library.

Helen Keller National Center URL

Date: Wed, 17 Sep 1997 15:00:33 -0400 (EDT)
To: 

From: 
 (Lois O'Neill)
Subject: HKNC webpage

Hi Karen,

  Our www URL is http://www.helenkeller.org/national/
  It is definitely a work in progress, but is usable now. And by the
way, your website is one I use quite frequently, as it is a good one. I did
not write ours, by the way, but I will be doing the editing. Hope this helps.


                                       Lois O'Neill


Lois O'Neill
Information Specialist
DB-Link/Helen Keller National Center
Sands Point, NY






Information about Deaf-Blind -- by Ilene D. Miner


Date: Tue, 31 Dec 1996 03:02:46 -0800
From: "ilene d. miner" (
)
To: 

Subject: deafblind-- mailing lists and a web site


Dear Karen,

Your site gets better by the minute:

a deafblind mailing list: lots of culturally deaf people with Usher 
syndrome, parents and professionals.

to subscribe:
e-mail to 

   body : subscribe deafblnd your name
    note: deafblnd must be spelled as above....


retinitis pigmentosa mailing list: also lots of people with Usher

e-mail to 
  

	message in body:
                  subscribe RList  your name


terrific WEB resource on deafblind. Hugh Sasse has put together really 
everything there is to find on deafblindness. He's handed over the reins
to James Gallagher who maintains it at:

   http://www.deafblind.co.uk/

The FAQ was compiled from postings on deafblnd list.

Thanks so much

Happy New Year

Ilene Miner,
Consulting clinical social worker
helen Keller National Center
Sands Point, NY




From: Ilene D. Miner (
)
To: Karen Nakamura
Date: April 26, 1996

This letter printed by permission of author

Can you add some stuff about deaf-blind...The deaf-blind communities are
comprised of many different people and communication styles. But a
substantial number have Usher syndrome, Type 1, ...and they are mostly
deaf community members, people who grew up in the Deaf community and sent
to deaf schools.

The American Association of Deaf-Blind is meeting in Tulsa Oklahoma on
June 17-25. The home office of AADB is the same as NAD, 814 Thayer
Avenue, Silver Spring MD 20910.

This year there will be a special teen leadership section at the
conference. Those interested can contact Helen Keller National Center, at
516-944-8900, asking for Janet Stevely

Those interested in attending the convention or more information can
contact Joy Larson, AADB home office at tty 301-588-6545 or fax
301-588-8705

Thanks a lot for this wonderful place--it keeps me occupied--too much I
fear <smile>

ilene miner
clincial social work consultant
helen keller national center
sands Point ny 11050

Subject: Deaf Blind Information

Date: Mon, 15 Jul 1996 14:22:33 -0700
From: Randy Klumph (
)
To: 

Please add the following site to your topic of deaf-blind located on page http://www.deaflibrary.org/deaf_blind.html

DB-LINK is a federally funded information and referral service that
identifies, coordinates, and disseminates (at no cost) information
related to children and youth who are deaf-blind (ages 0 to 21 years).
The DB-LINK Web site has several factsheets relating to deaf-blindness
as well as links to other resources.

http://www.tr.wosc.osshe.edu/dblink -- no longer functioning

From: Hugh Sasse (
)
Date: Wed, 29 Jan 1997 21:42:54 GMT
To: 
 

Just looking at your Deafblind Issues page. I have those methods of communication metioned in my DEAFBLND FAQ. I have a deafblindness WWW resource. It is at:

	http://www.image.dmu.ac.uk/~hgs/deafblind/

and it has links to various US sites, and a list of service providers in the USA

thank you

Hugh Sasse

Date: Wed, 14 Jan 1998 20:58:12 -0500
From: Ilene Miner 

To: 

Subject: deafblind

Hi Karen,

Some new sites to list for deafblind

Sense: www.sense.org.uk

Sense is the British Deaf-Blind and Usher services and research group.

An A-Z to Deafblindness

This is a wonderful site designed by James Gallagher of Scotland who is deafblind from Usher syndrome. it is chock full of information, graphics like a moving fingerspelling Welcome!

Thanks!

Ilene Miner
clinical social work consultant to 
Helen Keller National Center

This page was last updated on September 16th, 2002.

Approximately accesses since May 13, 1996.