Subject: 0  Introduction and intent


This is the FAQ for the DEAFBLND list, and it covers
the list and the topic of deafblindness.  It is 
intended to provide useful information, but it is not
intended to prevent people from discussing the topics
that it covers.

It is version 1999-07-22-17.  This number is a date stamp.

Copyright © 1996-1999 Hugh Sasse. 


Subject: 0.1  Disclaimers

This information is supplied as is without any 
warranty, express or implied.  The contributors
or the sites serving this document
assume no responsibility for errors or omission,
or for loss or damage resulting from use of the
information contained herein.  Any opinions expressed
in this document do not necessarily reflect those
of the contributors' employers or those of the sites
serving the document.  Any such opinions may not
accurately reflect those of the contributor, because
distortion may have crept in when compiling the 

Every effort will be made to ensure the accuracy
of this article, and comments and corrections are


Subject: 1  Contents

         0  Introduction and intent
         0.1  Disclaimers
         1  Contents
         2  Changes
         3  Where can I get this FAQ?
         4  What is the DEAFBLND list?
         4.1  Who may join the list?
         4.2  What are suitable topics for the list?
         4.3  How do I subscribe to /unsubscribe from the
         4.4  Can I block mail from it while I am away?
         4.5  Can I get old messages from the list server?
         4.6  Does it provide a DIGEST mode?
         4.7  I cannot afford to get large messages.
              What can be done to help?
         4.8  How can I get at the large messages
              stored on the listserver?
         4.9  Can I get a manul for the listserv commands?
         4.10  The list is quiet -- is the server working?
         4.11  How can I search the list archives?
         4.12  How can I find out about other 
               mailing lists that may interest me?
         4.13  Are there any "chat rooms" or IRC
               channels for deafblind people?
         5  Deafblindness
         5.1  What is Deafblindness?
         5.2  Is it "deaf/blind", "deafblind", "deaf-blind"
              or what?
         5.3  Are all deafblind people profoundly deaf
              and totally blind?
         5.4  What are the causes of deafblindness?
         5.4.1  What is Usher Syndrome?
         5.4.2  What is Retinitis Pigmentosa?
         5.4.3  What is Rubella?
         5.4.4  What is CHARGE Syndrome?
         5.5  How do deafblind people communicate?
         5.5.1  How do deafblind people communicate
                with each other?
         5.5.2  How do deafblind people communicate
                with the general public?  If I want to communitcate with a 
                  deafblind person, how should I approach
         5.5.3  How do deafblind people communicate
                with their computers?
         5.5.4  What about children who are born deafblind
                and have limited language skills?  My deafblind child is misbehaving or
                  throwing tantruems. What can be done?
         5.6  How do deafblind people get about?
         5.6.1  Do deafblind people use different coloured 
                canes from blind people?
         5.6.2  Can deafblind people use guide dogs?
         5.7  What is an SSP/interpretervenor?
         5.7.1  What makes the perfect SSP?
         5.8  Is there a Deafblind Culture?
         5.9  Who was Helen Keller?
         5.10  How can I help my preschool child,
               recently diagnosed as deafblind?
         6  Where can I get more information?
         6.1  How do I get at these Internet things
              (FTP, Web etc) by E-Mail?
         7  Who has contributed to this FAQ?
         8  Where do I send comments on, or corrections
            to, this FAQ?


Subject: 2  Changes

Version: 1999-07-22-17.  A number of changes:
   "A Deafblindness WWW resource" has moved
   so links to the old site have been replaced
   by and

   After heated debate on deablind culture
   I have expanded that section considerably.
   (See credits.)

   The FAQ is now converted from Plain text
   to HTML automatically -- all HTML markup
   has been removed from the source.  One
   or two bits of emphasis have been lost
   as a result, but maintenance is easier.

   I have removed and replaced the dead RP 
   information URL.

Version: 1999-04-19-20.  Deleted info on IRC channel on
"deepsace" site as it is now #deaf, not #deafblind.

Version: 1998-10-16-18.  Added info abut chat rooms and 
ICQ.  Added 4useries to 6.1.

Version: 1998-08-25-21.  Added info from AADB to 5.8 and
corrected the e-mail address in 5.4.1

Version: 1998-03-31-17.  Added mailing  list info to 5.4.4

Version: 1998-03-26-22.  Added 4.11 about the list archive
and 4.12 about finding other lists

Version: 1998-01-09-17.  Added about misbehaviour
as a form of communication.

Version: 1997-11-12-17.  Added note about accessing 
web, ftp by e-mail.

Version: 1997-06-03-13.  Added note about things not to
post to list.

Version: 1997-05-01-12.  Changed domain name
to in this document.

Version: 1997-02-12-13.  Added 5.10 about preschool

Version: 1997-02-03-13.  Added user manual for DB listserv
and info about Usher list.

Version: 1997-01-06-13.  Added Tadoma and Morse to Comms
secton, included info about NOT deaf/blind.

Version: 1996-10-30-10.  Site moved to another matchine
Put a bit more emphasis on giving your name in

Version: 1996-09-14-20.  Corrected info about NOMAIL command
and added description from Randy about how to get old mail.

Version: 1996-08-13-18.  Added info about how to approach
a deafblind person to communicate with them.

Version: 1996-07-31-17.  Added info about guide dogs

Version: 1996-07-26-17.  Added info about Usher and
RP, CHARGE syndrome and Rubella

Version: 1996-07-19-13.  Added info about files area
on the list server.  Started a list of contributors.
Added entry on Deafblind Culture.

Version: 1996-07-10-13.  Made narrower for ease printing
in larger fonts.

First released version: 1996-07-08-19.  This had all
questions filled in.

The first version (not released) of this Faq was


Subject: 3  Where can I get this FAQ?

It can be had from the Word Wide Web at


You can get an ASCII copy from the DEAFBLND list server
by sending an e-mail message to:
containing the command

You can ask me, Hugh Sasse for it.


Subject: 4  What is the DEAFBLND list?

It is a electronic mailing list which can be obtained over
the internet.  The topic of this list is Deaf-Blindness.
The purpose of this list is to share information,
inquiries, ideas and opinions on matters pertaining to
Deaf-Blindness. This list is open to professionals,
persons who are deaf-blind, and to their families and

See the following questions for how to subscribe etc.
If you send mail to
with the body containing
will listserver give you more information on the commands
you can use..

Messages to the whole list should be sent to .

The List owner is:
      Randy Klumph
so please approach him if you have difficulty subscribing

Before moving from LISTSERVE@UKCC.UKY.EDU the list was
set up and managed by the former 
Bob Moore                       STR002@UKCC
Sanders-Brown Center on Aging   STR002@UKCC.UKY.EDU
University of Kentucky          (606) 253-5960
so many thanks to him.


Subject: 4.1  Who may join the list?

People who are deafblind,
people who have friends or family members who are
people who work with or for deafblind people,
and anyone who is interested in deafblindness.


Subject: 4.2  What are suitable topics for the list?

Topics relating to deafblindness or of interest to 
the deafblind community.  The list is very relaxed, 
and does stray off the topic of deafblindness from 
time to time, but that is because it is a good way
for deafblind people to get together and chat about

However, please remember that the people on the list
vary in age (from children to pensioners) and in
background, with many different beliefs.  In the
past people have been upset by such things as talking
about religion and by sending rude jokes to the list.
If religious topics are related to deafblindness
directly then that is OK, but preaching or trying to
convert people is not.  If people are upset and leave
the list then valuable contributions from them will be

The existence of this FAQ is not to prevent
people asking any of the questions in it, but it is
to provide a source of answers.  Some questions will 
need further discussion to resolve them anyway.


Subject: 4.3  How do I subscribe to /unsubscribe from the

To subscribe send mail to
with the body containing the command
       SUB DEAFBLND &lt;full name&gt;
where &lt;full name&gt; is your first and last name.
To unsubscribe, mail to the same address with a message
body containing the command


Subject: 4.4  Can I block mail from it while I am away?

To temporarily prevent mail being sent to you, send mail to
with the body containing the command
To restore your connection 
send mail to the same address with the body:
You may wish to get the messages you have missed. See Section 4.5 .


Subject: 4.5  Can I get old messages from the list server?

To receive a listing of archived messages send the following command
in the body of an email message.


leave the subject blank if possible and do not include a signature.

Send the message to
(do not send it to the deafblnd list)

it will return a list that looks something like this 

* Archive files for the DEAFBLND list at TR.WOU.EDU
* (monthly logs)
* filename  filetype  GET PUT -fm lrecl nrecs date   time
* --------  --------  --- --- --- ----- ----- ------ ------
  DEAFBLND  LOG9601   LOG OWN V    82  2621 96/01/31 11:36:14 
  DEAFBLND  LOG9602   LOG OWN V   198  6159 96/02/29 19:41:12
  DEAFBLND  LOG9603   LOG OWN V   185  9506 96/03/31 23:23:28

Use the <GET [filename.filetype]> command to retrieve the file you

Using the above example, (notice that it requires the filename plus
the filetype);


You can request multible files by placing the <GET> command for each
file on a new line (as in the example above). The Log filetype 
indicates the date of the archive. LOG9601 is the file for the month 
of Jan96, LOG9602 is for Feb, etc.

The file(s) will be delivered to you as an email message.
If you have any problems, send a copy of any error messages you
receive to the ListOwner:
Randy Klumph


Subject: 4.6  Does it provide a DIGEST mode?

Yes. Digest mode will send you one message a day containing
all the messages together.  To get the list in digest form
send mail to
with the body containing
the message
To disable this:


Subject: 4.7  I cannot afford to get large messages.
              What can be done to help?

Many people are in the same position. They have to
pay to download large messages, and pay for the
telephone connection.  The way to help with this
is not to send large messages, but if you have
information (such as conference reports) to send them
   Randy Klumph
who will place them in the files area of the list.
Then you can send a command to the listserver to 
get at them.

As for what constitutes a large message, a figure
of about 200 lines is being suggested as the maximum
size people should post.


Subject: 4.8  How can I get at the large messages
              stored on the listserver?

First you need to know which ones are available.
Send e-mail to
containing the command 
to see what files there are.  NOTE This is different
from the command INDEX DEAFBLND which will index the
archived messages to DEAFBLND.
Then, to get a file  send the command
      GET <filename>
to the list server (the same address).  For example you
might say
to get this document.


Subject: 4.9  Can I get a manul for the listserv commands?

Yes. Send a message containing the command
to the list server:
You will get a document of about 108kB.
Alternatively you can find the information in various
formats at


Subject: 4.10  The list is quiet -- is the server working?

The list does hae its quiet periods. To see if the 
server is OK send a message with just the word
in it, to the list server:
If the server is working it will reply with
and if it is not working your message will bounce back
to you.


Subject: 4.11  How can I search the list archives?

If you want to know if a topic has been discussed befoere
there are a number of ways to search the archives.

1. Web

2. Search by subject, send the command


3. retrieve all messages by date range

SEARCH * IN listname SINCE yy/mm/dd

4. retrieve messages containing keyword by date


5. retrieve all messages containing keyword


Send all commands to


To learn more about how to use listserv, send the command


to the same address


Subject: 4.12  How can I find out about other 
               mailing lists that may interest me?

There are a number of places where you can find out
about what mailing lists exist on a subject.  One is
the Publicly Accessible Mailing Lists search engine at
See also Liszt at:
(which can be accessed by e-mail -- send a message to
with a body of:
search keyword
for more information). There is AOL's Mailing list directory at
and the lists of LISTSERV lists at
and L-Soft's CataList at
You can search L-Soft's database
by sending a message to
with a body of:
list global /keyword
where keyword is in the title of the list you are searching
for. LISTSERV is a trademark of L-Soft.
For Mailbase lists, which are really for the UK academic
community, see the Mailbase home page at
or send a message to
with a message body of:
find lists keyword
for more information.


Subject: 4.13  Are there any "chat rooms" or IRC
               channels for deafblind people?

A "chat room" or IRC (Internet Relay Chat) channel
is a "place" on the internet where people can type
to eachother in "real time", that is they can send
what they have said and get a reply in seconds.
In general, what one person says is "heard" by 
everyone in the room, so people can join in.
Information about IRC can be found at
and at:

There is an IRC channel called #deafblind on
the server This runs from
7pm-10pm Eastern Daylight time. 

On the server there is the IRC
channel #RPList.  More details on this one are
available at:

There is a WWW based chat room at$webb.exe/~2/login
Contact Randy Klumph
about this.

Does anyone know of any more? If there is a text
WWW page, or info available by FTP, to help people
sort out time-zones, that would be helpful too.

Software for IRC can be had from:
which has software for many platforms.

A number of people on the list can be contacted
using ICQ.  Details about ICQ can be found at
in particular there is a FAQ there at


Subject: 5  Deafblindness

This section is about the nature of deafblindness, 
the different forms it takes and its causes, and 
also communication methods and related questions.


Subject: 5.1  What is Deafblindness?

Deafblindness is any degree of hearing loss which
affects how someone does things, combined with any 
amount of sight loss with affects how someone does
things.  This is a paraphrase of the practical
definition used by (???), but basically means that
if your hearing and sight impairments both affect
your daily life, then you can describe yourself as


Subject: 5.2  Is it "deaf/blind", "deafblind", "deaf-blind"
              or what?

This has been a topic of debate, and there is no clear
answer as yet.  Some people feel that combining the words
deaf and blind to create the one word deafblind reflects
the experience that "the whole is greater than the sum
of the parts", i.e. that deafblindness is more than just
deafness plus blindness. Some people prefer the term
because it is easier to type: deaf-blind can easily be
keyed in as deaf=blind!  Others say that it is not normal
in English to combine words by abutting them, as it is in
some languages like German, and they prefer to use the
term deaf-blind.  Some people call the condition Dual
Sensory Impairment, but that is somewhat ambiguous because
there are five sense to chose from.  In short, as yet
there is no consensus.  The term is not written as
deaf/blind because a / usuallly means "either, or" but
does not include both.


Subject: 5.3  Are all deafblind people profoundly deaf
              and totally blind?

No.  Just as some people can describe themselves as 
deaf when they are not profoundly deaf, and many 
legally (US)/registered (UK) blind people still have
some useful vision, so it is with a deafblind person.
They may be hard of hearing and totally blind, or
profoundly deaf and partially sighted, or some other


Subject: 5.4  What are the causes of deafblindness?

There are many causes of deafblindness, but the two 
main causes are Rubella and Usher Syndrome.  
Other causes include traumatic accident, and age related
illnesses which lead to deafblindness in children or


Subject: 5.4.1  What is Usher Syndrome?

Usher Syndrome is the name given to a group of
conditions in which hearing loss is combined with
Retinitis Pigmentosa.  The name comes from the 
person who noticed the correlation between the two
conditions, Dr Charles H. Usher. Usher Syndrome
affects between 3 and 6 percent of the Deaf

There are currently 3 types of Usher Syndrome. At 
one time a fourth was proposed, but the proposer 
later retracted the suggestion.

Type I
   Born profoundly deaf.
   Has balance problems.
   Nightblind in early childhood.
Type II
   Born hard of hearing.
   Has no balance problems.
   Blind spots by teens. Legally  blind
      in early adulthood
Type III
   Born with good hearing or mild hearing loss.
   Has some balance problems.
   Nightblind in childhood, blindspots by early 
      adulthood, legally blind by middle age

More information can be found at:

on which this information is loosely based.

There is a mailing list about Usher Syndromd. Send a
message to

with a message body containing the line:

subscribe usher-list <your-email-address>

(substituting in your email address  for 
<your-email-address>, leaving off the <> characters.)
to join the list.

If you have any problems send email to:
Lynne Krumm <>


Subject: 5.4.2  What is Retinitis Pigmentosa?

Retinitis Pigmentosa (RP) is a name given to a
group of conditions in which the retina
deteriorates.  The retina is the part of the eye
which picks up the image formed by the lens.  It
has two types of light sensitive cells -- rods and
cones -- named for their shape.  Rods are used for
peripheral vision and for seeing in low light.
Cones are used for central vision and are used
for colour vision.  Usually in RP the problems
start with the rods, so people have a narrower
field of vision, and have difficulty seeing at
night.  They may notice that they miss obstacles
on the floor, or have difficulty with ball games.

More information about RP can be found at:

There is a mailing list about RP. Send a message to


with a message body containing the line:

subscribe rplist &lt;yourfirstname&gt; &lt;yourlastname&gt;

(substituting in your name for &lt;yourfirstname&gt;
&lt;yourlastname&gt;, leaving off the &lt;&gt; characters.)
to join the list.


Subject: 5.4.3  What is Rubella?

Rubella is also known as German Measles.  If a 
woman gets this when she is pregnant it can cause
the child to be born with disabilities, possibly
including deafblindness and possibly mental
retardation.  This can be prevented by vaccination
of the mother before pregnancy or by her getting
the disease and thus developing the antibodies
against it, again before pregnancy.


Subject: 5.4.4  What is CHARGE Syndrome?

CHARGE is an acronym which stands for:

        Coloboma of the eye
        Heart disease
Choanal Atresia
        Retarded growth
        Genital hypoplasia
	Ear abnormalities

Choanal atresia is the total obstruction of
the posterior nasal choana, which is the 
opening between the nose and the nasopharynx.
A Coloboma is a notch or gap in any ophthalmic

There is a mailing list about CHARGE. 

To subscribe to CHARGE-L send an e-mail message to

with a blank subject line.  In the message body put

Subscribe CHARGE-L 


Subject: 5.5  How do deafblind people communicate?

Deafblind people have a whole variety of methods for
communication.  The method someone uses will relate to
their level of sensory loss, their proficiency in the 
method, and their level and choice of language.


Subject: 5.5.1  How do deafblind people communicate
                with each other?

There are a variety of methods:

   Sign Language (ASL, BSL etc)
      This may be used by people who are culturally
      Deaf, and if they have sufficient sight they may
      only need good light and to be fairly close.
      For a glossary of deafness related terms like ASL
      For further information about sign language contact
      your local centre for Deaf people.

   Visual Frame Signing
      Used by Deaf people with tunnel vision, Eg from
      Retinitis Pigmentosa in Usher Syndrome.  This is
      like standard signing, but the hands are kept near
      the upper body and face, so they do not disappear
      outside the "tunnel" (which is really cone shaped).

   Hands-on Signing, Tactile Sign language
      This requires no sight, and is based upon sign
      language but without the facial expressions.  The
      person who is deafblind places their hands on the
      hands of the person signing, and they can feel
      the handshape, position and movement of the
      signer's hands to understand what is being signed.

   Fingerspelling, deaf-blind manual.
      The fingerspelling (which may be 2-handed British
      fingerspelling, or American one-handed
      fingerspelling) is felt by the deafblind person.
      This is not really used by culturally Deaf people
      because it is based on English (or other spoken
      languages) and so has a different structure from
      signed languages.

   Block, Spartan or Print-on-Palm
      This is where letters are drawn on the palm of the
      deafblind person's hand, one on top of another.
      The letters are block capitals, drawn with as few
      strokes as possible, to make it easier to feel.

   Finger Braille
      This is popular in Japan. The receiving deafblind
      person holds out 6 fingers like the keys on a
      brailler.  The sender presses these down together,
      chording, as they would if embossing braille.  

      Deafblind people who are hard of hearing may be able
      to hear speech.  Some people with a profound hearing
      loss are still able to speak clearly enough to be

   Lipreading/speechreading, cued speech
      Deafblind people with sufficient vision may use 
      lipreading or cued speech to understand speech.
      (Cued speech is where a handshape near the mouth is
      used to discriminate sounds with the same lip
      pattern (eg "P", "B" and "M", or "T" and "D").

      Tadoma is tactile lipreading (or tactile
      speechreading).  It is named after the first 2
      children to whom it was taught: Winthrop "Tad"
      Chapman and Oma Simpson. The person reading the
      speech places their thumb on the speakers lips and
      their fingers along the jaw line, touching the 
      speakers cheek and throat.  They therefore pick
      up the vibrations of speech as well as the lip

      Braille may be used by people who are used to 
      blindness before losing their hearing.  It may
      be used in communication by either brailling notes
      or by using a device like the Teletouch, which
      displays one cell of braille when a key on a 
      qwerty keyboard is pressed.  In this way Braille
      can be used for conversation as well as to access
      books, letters, computers etc.

   Morse Code
      This can be read by touch either by pressure or
      by vibration, Eg of a loudspeaker.

Of course this does not cover the aids to long distance 
communication that have been developed.


Subject: 5.5.2  How do deafblind people communicate
                with the general public?

The important thing is for the public to use the
communication method the deafblind person wants to use.
They know what works best for them. The method chosen
will have to be a compromise, generally, because not
many members of the public are familiar with methods
such as hands on sign language, for example.
The main problem is establishing communication
in the first place.

One way of doing this is to use an assistance card.  It has
been found that the order information is presented on the
card is important.

   The first thing is that you want help and what the help
      is that you want.  This must be a very practical

   The second thing is how you want people to communicate
      with you ("Using your finger like a pen, 'write'
      letters onto my palm", "Please write with this
      thick pen on this pad").
   Lastly that you are deaf and blind, partially sighted
      and hard of hearing, or whatever.

This is because if people see the information about you
being deafblind first, this tends to block out all the
other information.  This may be that they find it hard to
believe, or are just overwhelmed by the communication
problem, but it tends to make people not notice the
practical information you have given.

An alternative to an assistance card used by some people is
a taped message.  The same principles would apply.

Once you are communicating you may use any of the methods
deafblind people use with each other, or you may also use

   The Alphabet Glove
      This is a white glove with the letters of the
      alphabet written on it.  The deafblind person has
      learned where they are, the member of the public
      just presses the letter they want and the deafblind
      person feels which one it is.

   The Brailletalk
      This is a plastic "card" (actually with a fold over
      lid) with braille and raised characters on it.  The
      member of the public puts the deafblind person's
      finger on the braille character below the letter
      they want.  The deafblind person reads the braille.

   Pad and Thick Pen.
      Some deafblind people can read text written with a
      thick, dark pen.


Subject:  If I want to communitcate with a 
                  deafblind person, how should I approach

If you want to communicate with a deafblind person, and
you have to start the communication because they have not
started it, then you will have to make them aware that you
are there and want to communicate.  Also, you must be 
aware that there are a variety of ways to communicate.
Here is a suggested strategy:

1. Before making any physical contact, approach from the
   front, speaking the person's name as you approach.
   It might help to tell them who you are, as well.
   Move slowly to the side as you come within an arm's
   length to give the person the opportunity to use any
   useful central and/or side vision.

2. Come to within about 20 cm. (about 8 inches) of the
   person's ear and speak their name in a natural voice.
   NEVER shout. Even if the person is unable to hear
   speech, at that distance they may be able to pick up
   on voice intonation or the smell of perfume. Again
   it may halp to give your name as well.

3. Then gently touch the back of their hand, and leave 
   your hand there until the person makes the next move,
   such as feeling for your rings or watch, or starting
   to communicate in their preferred way. They may use
   their vision to follow your arm to your body and then
   to your face.

4. If the person does not communicate and you don't know
   which method they prefer, then perhaps this sequence
   may be helpful. After each attempt wait 5 to 10  
   seconds for a response.  If there is a response continue
   with that method, or whatever the person wants. If there
   is no response, try the next method.

      Usign tactile sign language, say "hello" and the 
      person's name sign if known.

      Using tactile fingerspelling/deafblind manual say
      "hello", and give the person's name if known

      Usign Block/Spartan say "hello", and give the
      person's name if known

   If none of these work, try natural gestures and using

5. Remember that the person may not recognise you. In 
   general the vision of visually impaired people, and
   therefore deafblind people, can change from day to day,
   and it will depend on the amount and quality of light
   that is there.  Also, if you are not in the context
   in which you normally meet them they may not recognise
   you. So it can be helpful to say who you are.


Subject: 5.5.3  How do deafblind people communicate
                with their computers?

This may be achieved with large print display, braille, or
synthetic speech, depending on the degree of sight/hearing
loss.  Also there is some work on fingerspelling devices
which the deafblind person can feel.  This can be quite
quick if it is their normal mode of communication.

It is normally getting information out of the computer that
is a problem; deafblind people like blind people can touch
type to get the information in.


Subject: 5.5.4  What about children who are born deafblind
                and have limited language skills?

Exposure to language is critical in its development
Hearing babies are constantly exposed to speech, and Deaf
babies may be constantly exposed to Sign.  Language
acquisition is more difficult for the deafblind baby, as
all the language it can pick up is that directed to it.

Given that it is much harder and may take longer to achieve
language, some other system will be needed to help convey
the structure of the child's day.  If s/he does not know
what is happening s/he may feel that things just happen
with no system to them.  Because of this people have
developed symbolic communication, using objects.  So if
the child is presented with a sponge, s/he knows that
s/he is about to have a bath.

This also allows choices to be offered to the child, Eg 
different sorts of play, or different food.


Subject:  My deafblind child is misbehaving or
                  throwing tantruems. What can be done?

Challenging behaviour, tantrums, or sometimes self 
stimulation  can be a form of communication. It
could be being used by the child if he or she can think
of no other way to communicate.  The circumstances in 
which it occurs can be a clue to this.  One example was
of a child who did this in a class copying out letter
shapes.  This was a task of no interest and with no meaning
for the deafblind child.  Another example was a child
who was recieving no stimulation from the teacher, and so
became bored, wanted attention or a change of activity.

People on the list feel that "time out"s for the child
(sitting him or her in a chair to remove him/her from the
situation causing the unwanted behaviour) will not work,
because this is removing stimulation from a child who is
getting no stimulation through their senses.  It is felt
that it would be better to distract the child into more
acceptable behaviour.

There is a video about this called "Ain't Misbehavin' --
Strategies for Improving the Lives of Students who are
Deaf-Blind and Present Challenging Behaviour". It is 
available from the Outreach Department of the Texas School
for the Blind and Visually Impaired, Austin, Texas USA.
It is dated 1993, and is accompanied by a comprehensive list
of further resources.

See also: Baumgart, D., Johnson, J., & Helmstetter, E. 
"Augmentative and alternative communication systems
for persons with moderate and severe disabilities."
Paul H. Brookes Publishing Company, 1990


Subject: 5.6  How do deafblind people get about?

Deaf people don't generally have mobility problems, but
blind people do.  So deafblind people use basically the
same techniques that a blind person uses, although they
may need more help crossing a street as they cannot depend
on the audible cues to tell them when the road is clear.
Some of the electronic mobility aids used by blind people
such as the laser cane or walkmate have tactile outputs
for the deafblind user.

The main difference in mobility is in communication with 
other people, asking for assistance, etc.  This is covered
in Section 5.5.2, above.


Subject: 5.6.1  Do deafblind people use different coloured 
                canes from blind people?

This varies.  In the UK deafblind people use a white cane
with 2 red bands on it.  Canadian white canes have a red
band near the tip, but that is different.  The red bands
on the canes for deafblind people should be roughly the
same width as the white spaces in between.
In the USA they generally just use a white cane.  
In Australia sometimes orange or maroon bands may be used.

Some deafblind people may just use a white cane, because 
people know what that means.  Someone in the UK was told
that people thought the colours were there to signify
support for the local football team!


Subject: 5.6.2  Can deafblind people use guide dogs?

Yes, but only a few schools will take deafblind
applicants. It may vary from school to school, and on
the amount of sight and hearing a person has. People
who are profoundly deaf and totally blind have had guide
dogs.  However, the person will need to be fit enough
to use a dog enough for it to be exercised, and also
they must be able to look after it.


Subject: 5.7  What is an SSP/interpretervenor?

An SSP is a Support Service Provider.  There is a lot of 
different terminology used for this role, which is that
of guide and interpreter.  Some people call these people
guide communicators, or guide-helps, and some intervenors.
Sometimes the terminology varies according to the skill
the person has.   Interpretervenor is a convenient term
invented by Kerry G. Wadman as a result of a word
processing error, that combines the idea of interpreter
with intervenor.


Subject: 5.7.1  What makes the perfect SSP?

The perfect SSP has had the sense to move to a country with
no pollution or tax and where long canes last more than
6 months! :-)   But things to look out for include, in no 
particular order:

      Willing and able to use a variety of communication 
      methods as circumstances dictate.

      to the needs of the deafblind person, and to be
      willing to listen to what they want.

   Complies with code of ethics.
      There are a number of such codes, but important
      things for deafblind people are:
            This literally "goes without saying"!
         Communicates fully and accurately
            Deafblind people may want to know about facial
            expression as well as the words and tone used.
            This also includes letting the client know what
            choices there are that can be made.

   Offers the deafblind person choices.
      It is all too easy to decide for someone when
      communication is an effort.  This combined with not
      having access to information means that too often
      decisions are made for the deafblind person, when
      they may have wished something different.

   Makes role clear
      If the SSP is guiding and not interpreting, and
      perhaps talking to the deafblind person, they will
      need to make it clear when they switch over to
      interpreting. Otherwise it may not be clear if
      the interpreter is speaking, or someone
      else, and the deafblind person may not even know
      there is anyone there.


Subject: 5.8  Is there a Deafblind Culture?

Although there is still debate about this, the 
consensus seems to be that there is not, although
some remain willing to be convinced otherwise.
This situation may be changing in the direction of
there being a concensus on there being a culture,
see below.

Deaf Culture is based on a shared language and
behaviours, such as waving, tapping on the shoulder
or stamping on the floor to attract attention. 
Sometimes people talk of text telephones and
flashing doorbells as being part of Deaf culture.

Part of the reason for there seeming to be no
Deafblind culture is the wide variety of
communication methods used by deafblind people.  Also
that deafblind people are very sparsely distributed

There is a deafblind community, however.  Deafblind
people do have shared behaviours, for example: applause:
hearing people clap their hands; deaf people wave
them in the air; and deafblind people stamp on the
floor to applaud.

However, at the 1998 AADB convention there was a 
workshop on Deafblind Culture, and people there felt
that there was a culture and the evidence for this
was the shared behaviours described below.

Deafblind people are comfortable with physical contact, 
and at the convention people would hug each other, and 
sometimes only afterwards ask the person's name.

Seating in the room for meetings would start out in
nice, orderly rows, and then get jumbled up as people
rearranged it to be suitable for tactile interpreting.

Communication really only works well on a one-to-one
basis, and meetings of a larger number of people are
difficult.  When people must talk in groups they 
often use a relay system, passing the message along
a line of people.

When deafblind people get together, they live by
"deafblind time".  This is often joked about, with
meetings getting late, etc, but it is really a
recognition that communication is slower than for the
fast-talking hearing community or the fast-signing
Deaf community.

A culture needs a good sized group, but because
deafblind people are spread out, the culture works at
a national level.  Deafblind people don't seem to
travel for holidays, only for meetings, someone joked!

Deafblind culture is multi-cultural, given the
diversity of forms of deafblindness, and the different
communication methods used.

Deafblindness is hard to identify, so that linits how
well one can identify a community with a culture.  It
maybe that it would be more widely recognised if it
were easier to identify.

There are several examples of cultures which are
multi-lingual, which disproves that a single language
is a necessity for a group of people to share a
culture.  For example, in Kenya, both Swahili and
English are official languages, and there are many
other tribal languages.  In Ghana English is official,
but people also use Ga, Akan, Ewe and Moshi-dagomba,
and other languages.  And there are other examples.
These linguistic groups may be considered
"subcultures" of the culture, because they do not
conflict with the culture (if they did it would be a
different culture), but they need not coincide. 
Similarly, two subcultures are distinct if the values,
or beliefs, or shared symbol systems, or behaviours
differ between the two.  (Here we are considering
language to be the shared symbol system).


Subject: 5.9  Who was Helen Keller?

Helen Keller was the first deafblind person to 
become famous.  She was not born deafblind, but
became deafblind due to an early childhood illness.

She is quite a controversial figure in some ways
because although she did a lot for the deafblind
community she became synonymous with deafblindness,
so that parents sometimes expect their deafblind
children to achieve as much as she did.  This is
unreasonable because everyone has different levels
of ability for different tasks, and people develop
at different rates. 

There are a number of biographies and bibliographic
references on the World Wide Web about her, and you
can find some from "A Deafblindness Web Resource":

or from "A-Z to Deafblindness"


Subject: 5.10  How can I help my preschool child,
               recently diagnosed as deafblind?

There are no simple answers to this because of the
large variation in degree of deafness and blindness
among children.  You will be able to get useful help
and contacts from the DEAFBLND mailing list, but you
may find these tips useful to help your child:

   Consistancy: -- make sure things happen the same way,
   so the child can learn some order in a baffling world
   where things come out of nowhere, and then disappear!
   Communication is important and ways to help this
   include using objects to say what will happen, and
   later to offer choices; Eg a sponge means a bath, or
   a spoon means a meal... These can then be used to
   develop language, be that sign language or whatever.
   Try not to push things into the child's hands, let
   him/her take them; this is much less threatening,
   and develops the child's confidence in themselves.
   Listen to professionals, but don't give in to them!
   They have a lot of experience, but you have more
   experience of what your child is capable of than they
   do.  Educate yourself about educational options and
   resources so you can actively direct your child's

   Don't compare your child to Helen Keller. She was
   exceptional, but even she did not do what many
   deafblind people do today: travel independantly
   with a cane.


Subject: 6  Where can I get more information?

There is information on "A Deafblindness Web resource" at

and the "A-Z to Deafblindness"

and of course from the DEAFBLND list.


Subject: 6.1  How do I get at these Internet things
              (FTP, Web etc) by E-Mail?

There are various documents describing the services
that can be accessed by electronic mail.  These
documents can be obtained by e-mail and some are
listed here.

The Accessing the Internet by Email FAQ
can be obtained by sending e-mail to one of the
addresses below.

(for US, Canada and South America)
Enter only this line in the BODY of the note:
  send usenet/news.answers/internet-services/access-via-email


Subject: send accmail.faq

(for Europe, Asia, etc.)
Enter only this line in the BODY of the note:
  send lis-iis e-access-inet.txt

A series of documents can be ontained which describe many
different things which can be done by e-mail. Send an 
empty message to
and you will recieve a mail describing the documents


Subject: 7  Who has contributed to this FAQ?

This FAQ was written by Hugh Sasse.
Lots of people have helped, by discussing things
on the list they have allowed me to build up a 
picture that I could put in here.  The following
people have been particularly helpful:

Dona Sauerburger
   has helped by providing a lot of ideas on
   communication, and by offering constructive 
   criticism of the first release of the FAQ.
   A lot of ideas mentioned here will be found in
   her book, "Independence without Sight or Sound"

Randy Klumph
   For running the list, providing information about
   it, and providing the files area for such things
   as this FAQ and writing 4.5, and 4.11.

The NIDCD (National Institute on Deafness and
Other Communication Disorders) Hereditary Hearing
Impairment Resource Registry (HHIRR)
Dorothy Stiefel
   for information on Usher Syndrome and RP.

Sharon Barrey Grassick and Dorothy Walt
   for ideas on how to approach deafblind people when
   you want to communicate with them.

Rod Macdonald
   for information on Tadoma.

Ayiba Peters
   for providing examples of mulilingual cultures
   and definitions of subculture, in 5.8.


Subject: 8  Where do I send comments on, or corrections
            to, this FAQ?

Please send them to Hugh Sasse <>.