A Deafblindness Web Resource


Welcome to A Deafblindness Web Resource site. My name is James Gallagher and I am the owner of these pages.

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Terminology | Internet Resources | Conferences & Courses | Journals & Periodicals | Videos about Deafblindness. | Service providers | Bibliography | Equipment | Communication | WWW Access | E-Mail Services | Windows Access | Linux | Projects Authorship, etc

Terminology -- Deafblind, Deaf/Blind or Deaf-Blind?


Internet Resources relating to Deafblindness

There is little information available on the network about deafblindness compared to that available about deafness or blindness.. The largest source of information is the DEAFBLND mailing list, but a few other sites have useful information.
The DEAFBLND mailing list.
Oscar Sanchez Hernan <oscar@hobbes.fmc.uam.es> has put a lot of work in to make a WWW accessible archive of postings from the time that he joined the list. The official WWW accessible archives are now avialable at the hosting site, the Teaching Research Division of Western Oregon University going back to when Randy Klumph took over the list from Bob Moore. The revised announcement of the list describes how to join it, and what it covers, etc. There is now a copy of the DEAFBLND FAQ available for comment.
Rubella Fact Sheet
Rubella is said to be the most common cause of congenital deafblindness. The University of Washington Environmental Health and Safety Department have produced a pamphlet to be read before vaccination. Medaccess provide a page about Congenital Rubella Syndrome (CRS) and a page about the legal, isolation and diagnostic procedures for Rubella. There is a a page about CRS for clinicians. There is a very comprehensive page describing the symptoms amd laboratory procedures relating to Rubella, which is in plainer English than the wdhfs page. See also the US Department of Health's Centers for Disease Control's case definition for Rubella and CRS. There is a page describing Rubella and its demographics.
Information about Usher Syndrome
Usher Syndrome is a common cause of deafblindness, and consists of deafness and Retinitis Pigmentosa. There is a page describing some research into Usher Syndrome, but it has no links to other pages on it at the time of writing this (15-FEB-1996). There is further information from the Foundation Fighting Blindness but you may wish to delay image loading for this site. There is a text only page if you prefer. CNIB also have a page about RP. The Texas Association of Retinitis Pigmentosa, Inc (TARP) have a page about Usher Syndrome, and their webmaster has a page about Retinitis Pigmentosa. Hearing Concern have a page about Usher Syndrome. The article "Usher Syndrome: A Condition which Affects Hearing and Sight" by Mary Guest is available on the Sense WWW site Sense also have a brief article describing the types of Usher Syndrome.Deafblind Uk's Scottish Website has a page of links to their own information about Usher Syndrome. Medical Strategies, Inc have a page about Usher Syndrome and RP. They also have a page about RP in Usher Syndrome and a page about hearing loss and balance problems in Usher Syndrome There is a Library card about Usher Syndrome in the Library of Family Village. Also, DB-Link have some bibliographies about Usher Syndrome. Information about the genetic basis for Usher Syndrome is available from Hereditary Hearing Loss Homepage. Jeremy Sasser [:-) A different spelling, unlikely to be related!] has a good page of Usher Syndrome related links, with some nformtation he wrote for the NTID Focus magasize. George Askew has a collection of Retinal Degenerative Disease Resources including information about Retinitis Pigmentosa and Usher Syndrome. There is also the usher-list electronic mailing list which may be of interest. The International Retinitis Pigmentosa Association have member organisations around the world. An Usher Information Kit can be obtained from The (Australian) Deafblind Association. There is information about Usher and RP on the Planet Arrington web site.
Information about CHARGE Syndrome
This is from the Library of Family Village. See also The CHARGE Syndrome page which is titled "Minnow's Page", and also a quite detailed page from kumc.edu. There is also the CHARGE-L electronic mailing list which may be of interest.
Information for Parents of Deafblind Children.
DB Link is the (USA's) National Information Clearing House on Children who are Deaf-Blind. A page about Services for Children with Deaf-Blindness is provided by The USA's Department of Education as one of its special educational programs. The Texas Special Education Resource Centre has lots of information about IEPs etc. PACER [Text Only version] (The Parent Advocacy Coalition for Educational Rights) is a non-profit organisation serving families with disabled members. AskERIC is a query service for asking about the USA Education system. ERIC is the Education Resources Information Center. AskERIC can be accessed through the web, or questions can be put by e-mail to askeric@askeric.org. There is a database you can search using the web. MUMSis a Parent to Parent Network for those with children with rare disorders. Information about rare disorders can be obtained from the American National Association of Rare Disorders
A description of how to use the UK deafblind manual alphabet
is available from RNIB. A page showing this in pictures and a textual description of how to form the letters available from James Gallagher's A-Z to Deafblindness site.
A short article on the life of Helen Keller
There is a little more information about her on a page by David Hawkins, and another description on some pages about Ivy Green, her birthplace. She went to school at Perkins School for the Blind and they have a page about her. The American Foundation for the Blind have a page of Photographs of Helen Keller and her Biography which is basically an index page. They also have a Helen Keller Bibliography, and some archives which may be viewed by appointment.
Some US Congressional findings about deafblindness
This comes as part of a chapter on the Helen Keller National Center for Youth and Adults who are Deaf-Blind, which is part of title 29 of the US Code.
There is a Deaf-Blind Resource List provided by the American National Federation of the Blind.
There is a Deaf Blind Information page on The Low Vision Gatewy site.
The Great Lakes Area Regional Center for Deafblind Education(GLARDBE)
This site is based at the University of Dayton, Ohio, and provided by The Great Lakes Area Regional Centre for Deaf-Blind Education. on this site can be found online courses about deafblindness which are run from time to time.
A-Z to Deafblindness
An excellent UK site by James Gallagher, who is deafblind.
DB-Net
David Harrison's collection of information for deafblind people
Deafblind Network Australia
by Sven Topp topp-s@CS.UWA.EDU.AU. This site includes The Deafblind Web Ring.
A Collection of Deafblind Links.
From The Information and Resource Referral Center of Rehabilitation Research and Training Center on Blindness and Low Vision (RRTC) of Mississippi State University.
Ministerial comment on a project on education of deafblind children in the UK.
Research on the Tadoma Method of Speech Recognition
Abstract of a research paper.
Analysis of a Synthetic Tadoma System...
Abstract of a research paper.
An article from the proceedings of 2nd TIDE Conference about deafblind people and technology
Based on a number of studies in Sweden covering provision of braille textphones and computers to deafblind people, and the services that could be provided as a result. See also The "Social Computer" -- Technical aids in the homes of Deafblind People
Accessible Text Telephones for People in Australia who are Deafblind
A report prepared for the National Federation of the Blind Citizens of Australia.
A User Interface for Deaf-Blind People (Preliminary Report)
Abstract obtained from a Human-Computer Interaction (HCI) Bibliography.
The Interactive ASL and Braille Guide
Not claiming to be an exhaustive teaching resource but an introduction to the two communication methods.
Ralph...for Robotic ALPHabet
This describes a fingerspelling robotic hand which takes serial text input, and produces the American fingerspelling alphabet as output, for reception by a deafblind person. This could be used by those who don't know braille, or cannot feel it owing to a poor sense of touch. There is a longer description of the project at the Rehabilitation and Research Development Centre WWW site. Perhaps in tandem with the Talking Glove full dialogue would be achieved with the computer.
Poster sessions about Mobility and other issues.
These are aimed at deafblind and visually impaired people
Sensory Disabilities Research Unit
at the University of Hertfordshire's Psychology Department.
The Related Services Research Project
This covers support for the education of deafblind people (mainly children) in Vermont. You may need to delay image loading for this site.
Employment Resources in the USA for Deaf, Hard-of-Hearing and Deaf-Blind People
Augmentative Communication Devices For The Deaf-Blind
This article by Rodney Neely from the February 1995 edition of The Braille Forum describes how deafblind people access computers
Course: Russian Psychology and the Education of Deafblind Children
The Family Village "Deaf-Blind" library card
From the Library of Family Village.
Deafblindness links from Deafness Mining Co
The top part of the page is very graphical, but the text links are accessible enough. There is some good stuff here I had missed.
Teaching Orientation and Mobility Skills to Deaf-Blind Children Using Computer Generated Simulated Sound Environments.
Children who are visually impaired and also have a significant hearing impairment, are further disadvantaged in that they have less acoustical information available to them. Bi-lateral amplification is provided to help mitigate the hearing loss.  "Learning to hear" is a very important functional skill for children with dual sensory loss. Their ability to ambulate depends on it.

Pointers to Courses and Conferences

I am sorry but I cannot keep up to date with all the different conferences and courses to the extent that I could put the details here, because often the details (time, venue, etc) change after they are first announced). However, if people give me URLs for where the up-to-date information can be had I will point to them.
Australian National DeafBlindness Conference "Deafblindness: Keeping In Touch Beyond 2000"
Deafblind Uk's Scottish Website have a list of courses>
Deafblind International DbI, has a Page on it site about conferences at DbI.
The USA's Helen Keller National Center has a list of courses and seminars.
Introduction to the Psychology of Reading Development of Deafblind Children
This describes a course, which seems to be based on Russian methods.
On-line courses at GLARDBE
Intervenor for Deafblind Persons program at Medicine Hat College
DeafBlind New Zealand Incorporated, Announces Seventh Helen Keller World Conference In Conjunction with World Federation of the Deafblind First General Assembly is being held in Auckland New Zealand October 2001.
EURO 2000, European Holidays for Deafblind People. Lampernisse (Belgium)  : 27/08 - 02/09/2000

Lists of magazines, Journals and Periodicals related to Deafblindness

Deafblind American

The address to subscribe for the Deaf-Blind American magazine is:

American Association of the Deaf-Blind
814 Thayer Avenue Suite 300
Sliver Spring, MD 20910-4500

The office phone is +1 301 588-6545 -- Fax# +1 301 588-8705.
It it edited by Harry Anderson <hca@AUG.COM>

Deafblind Education

This is available from
International Association for the Education of Deafblind people (IAEDB)
c/o Sense,
11-13 Clifton Terrace,
Finsbury Park,
London
ENGLAND N4 3SR
E-mail: enquiries@sense.org.uk It is available to members, of which there are 2 types: It is available in English or Spanish.

Deafblind International DbI.

DbI Review is the print magazine of Deafblind International. It appears twice yearly, the two editions are dated January-June and July-December. All members of DbI recieve the magazine.

For further information about Deafblind International please contact.
DbI Secretariat,
Deafblind International,
c/o Sense,
11 - 13 Clifton Terrace,
Finsbury Park,
London
N4 3SR,
UK
E-mail: dbi@sense.org.uk
Web Site: http://www.deafblindinternational.org/
DbI info about membership: http://www.deafblindinternational.org/members/getin.htm
And the DbI Review magazine: http://www.deafblindinternational.org/review/review.htm

The Journal, DbI Review, is available in English, Spanish and on disk..  Development of materials in other languages is encouraged.
If you are interested in contributing articles to Deafblind Review, then you should e-mail suggestions or articles in either English or Spanish to eboothroyd@sense.org.uk

Deaf-Blind Perspectives

Deaf-Blind Perspectives is published three times yearly by the Teaching Research Division of Western Oregon State College. Information contained within the newsletter does not necessarily reflect the position of the Teaching Research Division. It is available from:

Deaf-Blind Perspectives
Teaching Research Division
345 N. Monmouth Ave.
Monmouth, OR 97361

or call Randy Klumph
(503) 838-8885
TTY +1 503 838-8821
fax: +1 503 838-8150.
E-mail: klumphr@fstr.wou.edu
Indicate media preference. Choose from:
Standard print; Large print; Grade 2 braille; ASCII; Wordperfect 5.1

EDbN Newsletter.

EDbN - European Deafblind Network
EDbN Secretariat
Lex Grandia, Secretary
Prinsessegade 28
DK-9400 N¯rresundby, Denmark
Tel: + 45 98 19 20 99
Fax + 45 98 19 20 57
Mobile + 45 23 26 91 52
E-mail: text only  lex.grandia@tp44.frukt.org
E-mails with attachments to: annth@post3.tele.dk
Web Site: http://www.edbn.org
EDbN Newsletter page: http://www.edbn.org/newslett.html
Since 1995 EDbN has published a newsletter 1-2 times a year in print, disk and internet versions  Since April  1999 EDbN Clipboard is published monthly by e-mail and fax.

RP Messenger

"RP Messenger" is a newsletter produced by TARP about Retinitis Pigmentosa. It also includes a certain amount of information about Usher Syndrome.

Managing Editor: Dorothy Stiefel <dstiefel@mail.interconnect.net>

For further information contact

Texas Association of Retinitis Pigmentosa, Inc. (TARP)
P.O. Box 8388
Corpus Christi
Texas 78468-8388
USA

Voice/TDD/fax: +1 512 852 8515

Talking Sense

Talking Sense is published quarterly by Sense. The annual subscription is £10. For futher information contact: 11-13 Clifton Terrace,
Finsbury Park,
London
ENGLAND N4 3SR
E-mail: enquiries@sense.org.uk

Taubblind

Taubblind is published in German by the German Association of Parents of deafblind children ( Fördergemeinschaft für Taubblinde eV). It covers issues that affect families who have deafblind members.

There are plans to distribute this by E-mail. Please contact taubblind@selbsthilfe-online.de about this.

Usher Around the World

This newsletter results from the merger of two newsletters: "Usher Family Support", which was designed for families of people with Usher Syndrome, and "About US", which was by and for people with Usher Type 2. Individuals with usher Type 1 and others felt that they, too, needed to be included. This newsletter will be supported entirely by subscriptions and donations.

Editor in Chief: Maggie King <mking@interaccess.com>
Associate Editor: Helen Anderson -- Email: c/o Kathie Anderson <kadbmn@aol.com>
Associate Editor: Janie Neal <Jneal19@aol.com>
Medical Editor: Sandra L.H. Davenport, M.D. <slhdaven@maroon.tc.umn.edu>

Subscriptions to:
Usher Around the World
c/o Kathie Anderson
P.O. Box 17318
Minneapolis, MN. 55417 USA

Cost per year is $16.00 in USA, $19.00 in Canada & Mexico and $22.00 all other. Make check payable to: Usher Around the World. Please pay in US dollars, preferably with an international money order. We have a $25.00 charge to cash a foreign check which does not have our banking codes printed on the check. Give your name, address, city, state, zip, phone by Voice or TTY. Indicate if you are US 1, US 2, US 3, family member, or professional. What preferred format would you like -- large print, braille or audio. Submitt all this information to the Subscriptions address as above.


Videos about Deafblindness Awareness, and Training Videos.
A list of Videos of particular interest to sighted hearing people. Please email me at James@deafblind.co.uk, about any more worthy of note.

Lists of places (mainly service providers) relevant to deafblind people around the world.

I am using the term "service provider" to include those who provide information, and services to professionals in the field, as well as information directly to deafblind people themselves.

I would appreciate lots of help with this one -- addresses, text/voice/fax numbers, corrections, etc.

The RNIB have a forms based query system for organisations for the blind and visually impaired. This has a menu to select organisation type, and one of the choices is organisations for the deafblind. However, many of you accessing the WWW by email may have difficulty with accessing this. So I have written an interface that does not use forms for searching for deafblind organisations by country. This should be accessible to most browsers.

See also Organizations for Deafblind People Throughout the World from A-Z to Deafblindness.

Africa (modified 23-JUNE-1999)
Australia(modified 22-SEPTEMBER-1999)
Britain (modified 28- APRIL- 2000)
Canada (modified 28-APRIL-2000)
Deafblind International DbI (Added 16-DECEMBER-1999)
Europe (modified 16-DECEMBER-1999)
which for my purposes here does not include the UK!
European Deafblind Union (EDBU) (added on the 22-SEPTEMBER-1999)
Japan (added 16-DEC-1999)
India (Added 14-MAY-1999)
The Middle East (added 05-MAR-1996)
New Zealand (modified 07-MAY-2000)
South America (modified 27-NOV-1997)
United States of America (modified 19-FEBRUARY-2000)
West Indies (Added 06-FEB-1996)
World (modified 22-SEPTEMBER-1999)
This is for the new World Federation of the Deafblind.
Hugh Sasse has an excellent site with information on Disability Organisations in the UK, this is his main home page.
http://www.eng.dmu.ac.uk/~hgs/hgs_disability.html
Hugh Sasse's Deafness Resources Page.
Hugh Sasse's Blindness Resources Page.
also there is Hugh's Dos info page


Deafblindness Bibliography

I am providing an unsorted bibliography with the information pretty much how I got it.

I have added the bibliography sorted by Date, the bibliography sorted by Title, and the bibliography sorted by Author derived from this. I have added fields to the data so that my programs can sort it. I KNOW there are mistakes in there and incomplete information. Eg, the videos are described as VHS format, but are they NTSC, SECAM, PAL or what? If there are any mistakes you know of, and any additional info you wish to add please let me know. I also think there are duplicate entries and possibly conflicting entries. It is a lot for one person to check through, so perhaps I can ask the authors of papers etc to search for their names, possibly misspelt, and those of their colleagues first. Thank you to all those who have provided me with references, and sorry if you have slipped through the credits at the top.

You may also wish to look at The American Foundation for the Blind's Helen Keller Bibliography, and the bibliographies under DBLink which has the bibliographies grouped by topic..


Equipment for Deafblind People

A list of devices of particular use to deafblind people, or designed for them. Please email me at James@deafblind.co.uk,about any more worthy of note.

Communication

This will be about methods of communication useful to deafblind people, when I can find more on the WWW about it. For now it just contains:
Morse 2000 home page
about accessing computers using Morse code. Found as link off L. B. Cebik W4RNL's home page.

WWW Access for Deafblind People

If you are reading this you can probably access the WWW easily enough, but if it has been passed to you or if you have people at your site who only have email access to the internet, then the following may be of interest.

CERN used to provide a means of accessing the World Wide Web by email, but they had mailer problems and the load got to much for them. They used a program called Agora which is a Perl (Perl 4 or 5) script, which drives the CERN line-mode WWW browser. The script can be set up on a Unix machine connected to the internet, and it drives the browser to obtain the documents in a text only form. An alias is set up so that mail to that alias gets passed to the script. The script extracts the URL(s) the person wants and emails the text form of the document(s) back to them. This means that the software can be used by anyone who can send mail to that machine. The Agora Perl Program and the line-mode browser (source, or executables for various platforms) can be obtained from ftp://www0.cern.ch/pub/Agora.

Rolf Nelson <rolf@usa.healthnet.org> has written a successor to agora. It was to be called sendweb but is now called getweb and will use the latest perl modules for this. Information about it can be found at http://www.healthnet.org/dist/getweb/. Alternatively, send a message containing the word

help
to getweb@usa.healthnet.org to get the information. This service now only operates on a commercial basis for those in the medical field (I think) as of the summer 1998.

Another WWW by email server is www4mail, and you can get information about this by e-mail by sending a message to <www4mail@wm.ictp.trieste.it> with a message body of

help
Some people have had problems with this server, and it is optimised for using a web browser and an e-mail program together, but it can be used by just e-mail alone.

There are other text mode browsers one can get, and a list of those that run under Unix and VMS(UK copy) and DOS(UK copy) can be found in the WWW FAQ (UK copy). The Lynx information in the FAQ is somewhat out of date. You are best looking at the "Lynx links" page, "Extremely Lynx". There are also The SLCC Lynx Pages. The list of DOS browsers does not include Net Tamer. The Net Tamer Home page claims it is speech friendly, and others have said it can be used with Braille. Other browsers that can be used with DOS are listed on the FDISK.COM DOS Internet Pages. The WWW FAQ also has a list of browsers that can be accessed by telnet(UK copy), but it seems to have been a while since this was updated.

For WWW searches you usually need a forms browser. I have a list of search engines together with some non-forms interfaces to them which I have created. These would be usable with Agora, for example.

There is a list of ways to access search engines by E-mail available by ftp. The intro file explains how to access the engines. It seems to use agora services and the like.

For those wishing to write accessible pages a good place to start is W3C Activity: The Web and People with Disabilities. See also W3C Disabilities Developments, which has a lot of links to useful documents.


More about Services provided by E-mail

As well as Agora access to the WWW, there are servers providing access to ftp, gopher, WAIS and other services. As well as those listed here, there are more on my E-mail page. Most of this information will be moved to there, to keep this page a reasonable size. A good list can be obtained from...a service accessible by E-mail! Send an empty message to DrBob@mailback.com for a 65k document describing the services, and where they are located.

You may also be interested in the Accessing the Internet by Email FAQ (UK Copy). To quote from it:

This document is now available from several automated mail servers.
To get the latest edition, send e-mail to one of the addresses below.

To: mail-server@rtfm.mit.edu (for US, Canada & South America)
Enter only this line in the BODY of the note:
  send usenet/news.answers/internet-services/access-via-email

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

You can also get the file by anonymous FTP at one of these sites:

Site: rtfm.mit.edu
   get pub/usenet/news.answers/internet-services/access-via-email
Site: ftp.mailbase.ac.uk
   get pub/lists/lis-iis/files/e-access-inet.txt
There is also Gerald Boyd's page on accessing services by e-mail at http://www.geocities.com/CapitolHill/1236/.

It seems a similar document may be had by sending email to: infomart@acy.digex.net with a subject line:

send email4u
Leave the body of the message blank.

There is a mailing list about accessing the internet by Email. It is a listserv list so you can join it in a similar way to DEAFBLND, but the server is different. To join the ACCMAIL list send a message to

listserv@listserv.aol.com
with a message body of
SUBSCRIBE ACCMAIL Firstname Lastname
You can ask questions on this list about the various services that can be accessed by e-mail.

There is a "newspaper" service called the Daily Brief which you can obtain by sending a message to incinc@tiac.net with a message body of

subscribe db
and it will send you news from around the world every day. I have not used this so I cannot vouch for its quality or how well it works.

Windows Access

The topic of accessing Windows has come up quite a bit on the DEAFBLND list. There are resources out there about this but they are hard to find. Some of these are companies' products. I have not used them and am not making any claims about their usability here.

If you do wish to continue using DOS, it seems that Caldera (UK site) are continuing to develop Caldera DR-DOS which was known for a while as OpenDOS. This is an Unofficial OpenDOS Home Page, and there is information on delorie.com's opendos page.

The "DOS Internet files" Web site or ftp site at ftp://ftp.westsound.com/pub/dos_internet/ may also be of interest to DOS users.

Windows tips for users with Low Vision
Access to Windows 95 for people with Low Vision: An Overview
From The American Foundation for the Blind.
Microsoft's Accessibility Support Page
Microsoft Product Documentation in Accessible Formats
contains downloadable .EXE files which unpack into documents, and references to other sources.
Sound effects in PC software -- trouble for the Deaf
is an article about making CD-Roms accessible to Deaf People.
OutSpoken for Windows
Speech access to Windows from Berkeley Systems.
JAWS for Windows
another speech access system from Henter-Joyce. There has been criticism of their Dueling (sic) Windows Report, that it was not exactly impartial.
Syntha-Voice
produce a number of products for speech and braille access to computers for deaf-blind people.
There are various software products for accessing Windows with Braille only.
Syntha-Voice
produce a number of products for speech and braille access to computers for deaf-blind people.
Screenpower for Windows
from Telesensory
More information can be had from Technical Aids Services page and the American National Federation of the Blind's Technology page. Also Dorton House School Access Technology Services have a wll organised collection of links on access equipment for blind people, many of which could be of use to deafblind people. If you know of more, or better ones please let me know.

Linux

Linux is a freely-available Unix-type operating system, which can be used in a text-only mode or with a GUI. The BLINUX Project aims to make Linux and its documentation accessible to blind people. The Linux Accessibility HOWTO document (UK copy) describes the accessibility features. The guidelines for Documenting Linux for the Visually Impaired mention the needs of deafblind people specifically. This project is an outgrowth of The BLINUX list which is a mailing list about this accessibility. There is a BLINUX FTP site at ftp://leb.net/pub/blinux/ and a Mirror site in Germany at ftp://ftp.gwdg.de/pub/linux/misc/blinux/.

As well as www.linux.org there is also www.uk.linux.org. Also there is the archive site www.linuxberg.org.


Projects

I have created a short list of projects needed to develop equipment for blind and deafblind people. My hope in putting them here is that they will spark off some useful work. Other ideas are welcomed.


Authorship, etc

Last modified on 7-May-2000 by James Gallagher <James@deafblind.co.uk>.