Deaf-Blind Information and Resources

This area of the website provides information relevant to deaf-blindness and communicating with persons who are deaf-blind. We hope that this material will make you more aware of the needs and challenges of persons who are deaf-blind.

Did You Know?
Definitions
Causes of Deaf-Blindness
Challenges Facing A Persons Who Is Deaf-Blind
Sighted Guide Techniques
Communication Systems
Technology Used by Deaf-Blind Persons

Did You Know?

A deaf-blind person is someone with loss of both sight and hearing. This results in difficulties accessing information.

A recent report from Statistics Canada states there are approximately 69,700 Canadians over the age of 12, living with the dual disability of Deaf-Blindness or a combination of both vision and hearing losses that limit their everyday activities. Only 3,000 of these have been identified by the organizations providing Intervenor Services!

Most of these individuals live in our communities and go to the same schools, jobs and shopping areas as we do.

Deaf-blind people do not have the same amount of help as Helen Keller did (24 hours a day). Some people in Toronto get up to 4 hours a day of 1 on 1 help from Intervenors; some get no help at all.

There are many different communication systems used by Deaf-Blind persons, some use the same system as Helen Keller. These systems include:
  • 2-Hand Manual (tactile spelling)
  • Finger Spelling - visual or tactile
  • Sign Language
  • Braille
  • Large Print
  • Keyboard Devices with refreshable braille displays and/or large print displays, etc.
Definitions

Deaf-Blindness

A person living with this disability is an individual with a substantial degree of loss of both sight and hearing, the combination of which results in significant difficulties in accessing information and in pursuing educational, vocational, recreational and social goals.

Deaf-blindness is a unique and separate disability from deafness or blindness. An individual with the combined losses of hearing and vision require specialized services including adapted communication methods.

Intervenor

An Intervenor provides a professional service, paid or voluntary, to facilitate the interaction of a person who is deaf-blind with other people and the environment. The Intervenor's job can include:
  • providing access to information (auditory, visual, tactile) by means of a variety of communication methods
  • acting as a sighted guide
These services are provided in the deaf-blind person's preferred method of communication, which can include tactile signing systems, braille, large print, communication boards, or any other method required.

Intervenor Services

The provision of a professional service, paid or voluntary, which facilitates interaction of persons who are deaf-blind with other people, places and the environment.

Causes of Deaf-Blindness

CHARGE Syndrome: CHARGE syndrome, is very rare, and affects 1 in every 10,000 births. It is a cluster of genetic birth defect that affects the development of the eyes, heart, nose, genitals and ears, as well as restricting a child's growth.

Usher Syndrome: This genetic syndrome is the most common condition that causes acquired deaf-blindness. There are 3 known types of Usher Syndrome at this time. It affects 1 in every 25,000 people. The loss of vision is due to an eye condition called Retinitis Pigmentosa.

Congenital Rubella Syndrome: If a woman contracts rubella during her pregnancy, it can cause serious damage to her unborn child, particularly to their eyes, ears and heart. The child will be born with Congenital Rubella Syndrome. Since routine rubella vaccinations were introduced in 1988, the number of babies affected by rubella has fallen.

Premature birth: If a child is born less than 37 weeks they are considered premature. This can lead to many complications to the baby which may include vision conditions such as retinopathy of prematurity, as well as other vision and hearing complications.

Age-related deaf-blindness: With aging, an individual may experience vision conditions such as Macular Degeneration, Glaucoma and Cataracts. These conditions combined with typical hearing loss associated with the aging process can cause an individual to be classified as functionally deaf-blind.

While these are some of the most common causes of deaf-blindness, it is by no means an exhaustive list. There are many causes that are not listed in detail in this section. These include Cytomegalovirus, or deaf-blindness caused by accident or trauma. For a more detailed list of etiologies of deaf-blindness please refer to the National Consortium on Deaf-Blindness at http://nationaldb.org/.

Challenges Facing a Person Who is Deaf-Blind

A person who is deaf-blind must somehow make sense of the world using the limited information available to him or her. If the person's sensory disabilities are great, and if people in the environment have not made an effort to order the world for him or her in a way that makes it easier to understand, this challenge may be overwhelming. Behavioral and emotional difficulties often accompany deaf-blindness and are the natural outcomes of the child's or adult's inability to understand and communicate.

People who can see and hear often take for granted the information that those senses provide. Events such as the approach of another person, an upcoming meal, the decision to go out, a change in routine are all signaled by sights and sounds that allow a person to prepare for them. The child or adult who misses these cues because of limited sight and/or hearing may come to experience the world as an unpredictable, and possibly a threatening place. To a great extent, persons who are deaf-blind must depend upon the good will and sensitivity of those around them to make their world safe and understandable.

The challenge of learning to communicate is perhaps the greatest one that children who are deaf-blind face. It is also the greatest opportunity, since communication and language hold the power to make their thoughts, needs, and desires known. The ability to use words can also open up worlds beyond the reach of their fingertips through the use of interpreters, books, and an ever-increasing array of electronic communication devices. In order to learn language, children who are deaf- blind must depend upon others to make language accessible to them. Given that accessibility, children who are deaf-blind face the challenges of engaging in interactions to the best of their abilities and of availing themselves of the language opportunities provided for them.

A person who is deaf-blind also faces the challenge of learning to move about in the world as freely and independently as possible. Adult individuals also must eventually find adult living and work situations that allow them to use their talents and abilities in the best way possible. Many adults who are deaf-blind lead independent or semi-independent lives and have productive work and enjoyable social lives. The achievement of such success depends in large part upon the education they have received since childhood, and particularly upon the communication with others that they have been able to develop.

Sighted Guide Techniques

The sighted guide technique provides the visually impaired person with a basic travel method using the physical assistance of a sighted person. The visually impaired person learns to interpret the elbow movements of the guide walking with him.

Basic Technique

The blind person always holds the sighted guide's arm (not vice-versa). The guide puts out her hand or arm to make contact. The blind person then takes her arm just above the elbow. This leaves the guide's hands free (for carrying, opening doors, etc.). With four fingers on the inside, and the thumb on the outside of the elbow, the blind person feels the motion of the guide's body.

By flexing his elbow to about 90 degrees, the blind person stays a half-step behind the guide. This allows time to interpret and react to the guide's movements. To minimize his body width and to avoid moving beyond the protection of the guide, the blind person's flexed arm remains close to his body, with his shoulder lined up directly behind the guide's opposite shoulder.

Stairs

The guide alerts the blind person that they are about to go up or down stairs. The guide approaches stairs squarely and pauses at the foot or head. The blind person may or may not wish to switch to the side with the handrail. The blind person brings his foot forward to locate the first step. The guide takes the first step and both proceed. As a cue that they have reached the bottom or top, the guide pauses again at the end. The process of pausing at tops and bottoms of stairways can be used effectively with street curbs as well.

Narrow Passage Technique

When there is not enough space for the blind person and guide to walk in the usual position, (e.g. narrow aisles, doorways, etc.), the narrow passage technique is used. The guide signals a change in position by moving her arm back and to the centre of her back. The blind person then steps behind the guide so the two are in single file.

To prevent stepping on the guide's heels, the blind person straightens his arm, thus placing him a full step behind. After leaving the narrow passage, the guide signals by moving her arm back to the side and normal position is resumed.

Adaptations for Deaf-Blind Persons

Many people who are deaf have balance problems. therefore it is important to determine if physical supports are needed. It is best to ask the person needing your help how you can help them - each person has different preferences.

Originally published by: CNIB, 1929 Bayview Avenue, Toronto, Ontario.

Communication Systems

Intervenor Services provide access to information, using the preferred communication system of the individual who is deaf-blind. Through intervenor services individuals who are deaf-blind are able to gain and maintain their independence.

1. Sign language systems

American Sign Language (ASL) - ASL is the natural language of the culturally Deaf and is made up of a combination of gestures (signs), hand shapes facial expressions, and a specific grammar structure. ASL is not simply English translated into a visual language; rather it is a unique language with its own syntax and grammar. Signs are made by hands forming shapes in specific locations with exact movements. ASL grammar uses spatial relation visually displayed with the signing frequency, direction and orientation of the hands to indicate singular or plurality, subject vs. object etc. This language is one of the preferred primary modes of communication of the adult deaf-blind population.

Signed Exact English (SEE) - SEE is a visual communication system where English is translated into visual form. Signs are arranged in English word order and word endings such as "ing", "ed" and "s" are added onto the end of signs.

Tactile American Sign Language (formerly called Manipulated or Modelled Sign Language) - The person who is deaf-blind receives communication with his/her hands resting on another individual's hand while the message is being signed. The individual who is deaf-blind then uses their preferred mode of communication to communicate their response back to the other individual, communication continues in this manner.

2. Fingerspelling systems

Fingerspelling - A system of hand-shapes represent the letters of the English alphabet. Words can then be spelled out using these hand shapes.

Two Hand Manual - In this communication system letters of the English alphabet have corresponding areas on the palm of the hand. For example, vowels "a" "e" "i" "o" and "u" are represented on the tips of each finger; the letter "l" is represented by placing the index finger across the palm of the hand. Two Hand Manual is used by many of deaf-blind adults in Canada as their preferred primary mode of communication.

3. Print and print related systems

Print on Palm (POP) - Using the palm as a writing surface, the speaker holds the deaf-blind person's hand with the palm up. The speaker's index finger is used like a pencil to print each capital letter on the palm of the hand. This system is often used as a way to interact with the general public.

Print on Paper - This system uses black felt marker on white paper, or on a white board, to write a message to the individual who is deaf-blind. It requires no learning of alternate systems and is effective with the general public.

Telephone Devices for the Deaf, (referred to as TDD or TTY) - A small keyboard device with a modem for telephone and visual display is used to send the message over the telephone to another TTY. A large print screen is available to accommodate those who have very limited vision. You can also get systems that allow a refreshable Braille hookup. With the introduction of the Bell Relay Service in Canada, individuals who are deaf-blind can communicate with their TTY via special operators who relay messages via phone.

4. Braille systems and other tactile systems of print

Braille - This is a system of touch reading for the blind that uses a cell with six raised dots. The six raised dots when arranged in combinations form the letters of the alphabet, punctuation and word contractions. Braille is used by people who are deaf-blind who cannot access print.

Moon Print - Moon uses an alphabet of nine characters placed in various positions on the page. Moon print reads alternately from left to right, then right to left with guide lines to indicate direction. This system is used mostly in England but can be used as an alternative for persons who have difficulty with the fine tactile dots of braille.

5. Object referencing systems

Object Cues - Cues are given to the individual who is deaf-blind in a predetermined order to communicate specific concepts, ideas and tasks. Object reference systems use visual, tactual, olfactory and concrete symbols, pictures and art to convey a message. This system is most often used by persons who are congenitally deaf-blind. It can also be used in part with deaf-blind persons who have intellectual disabilities.

Communication Boards - This system is used to convey a message usually in an environmentally specific manner. The board can have display of English words or alphabet tactile symbols, art, pictograph symbols, etc. and is used to encourage the individual who is deaf-blind to communicate with individuals in their surroundings.

6. Residual hearing and speech

Hearing Aids - Hearing Aids are assistive devices that individuals wear in their ear that amplify noises in the environment. There are many different types of hearing aids such as in-the-ear hearing aids and behind-the-ear hearing aids. While most individuals using a hearing aid use it to better understand speech, there are some people who use them solely to be aware of environmental noises.

Cochlear Implants (CI) - CI's are devices that are surgically implanted into an individual's ear that is hooked up to a transmitter. This allows individuals who have severe or profound hearing loss to be able to hear speech and/or environmental noises.

FM Systems - This device consists of a personal receiver worn by the person with the hearing loss and a transmitter worn by the speaker. The amplification provided by the person with the hearing loss allows them to participate in a large audience setting as the speech is transmitted directly to the personal receiver blocking out other environmental sounds.

Speech Reading - Individuals who are deaf-blind and have some vision can use speech reading. It is a process that involves the person who deaf-blind looking at the speaker's lips and through visual and contextual cues gather an idea of what is being said. By speaking with exaggerated enunciation and lip movements it is easier for the individual who is deaf-blind to understand what is being said.

Tadoma - The Tadoma method is a system of receiving speech through the sense of touch. The person who is deaf-blind places his hand on the face of the speaker, the thumb gently touching the lips and the other fingers spread over the cheek, jaw and throat. This technique takes specialized teaching and years of practice to perfect.

Technology Used by Deaf-Blind Persons

There are a number of assistive devices that help make life easier, more enjoyable and more productive for people who are deaf-blind. They include, but are not limited to, the following:

Computers can be set up with programs that provide screen magnification with large fonts and high contrast colour settings, speech output to read the screen out loud, or braille output to a braille display. Information can also be printed in braille on a Braille embosser. This makes a huge difference, allows one to use computers effectively for communication and access to information.

CCTV Readers are electronic magnification devices that allow people to zoom in and independently access a wide variety of items, such as books, pictures, food packages, pill bottles, product prices, restaurant menus, and much more. CCTVs come in both large models for home use and compact portable models that can be used on the go, to suit a wide variety of needs.

The Deaf-Blind Communicator is a braille notetaker that allows people who are deaf-blind to communicate with hearing sighted people, by typing back and forth on the notetaker and a smartphone that comes with it.

TTYs and VideoPhones are both used for communication, to make phone calls. The TTY is a device similar to a typewriter with a visual display, where the person types on it and the person on the other end types back to them via another TTY. The videophone uses a camera and TV screen, allowing people to see each other and communicate via sign language. People can make calls for information, call family or friends to chat, or call for help in an emergency.

Smartphones, such as the iPhone® and Blackberry®, now have applications for screen magnification, large fonts, high contrast colour settings, screen reading and braille display compatibility. This allows people who are deaf-blind to keep in touch with family and friends while on the go, using phone, email and text messaging. Smartphones also allow for accessing and storing information using the internet, address books, GPS, task managers and more, while using the same devices that the general public uses, instead of needing specialized equipment.

Alertmasters and other alerting devices can be used to notify individuals who are deaf-blind to things such as someone is at the door, the phone or TTY is ringing, a baby is crying, and so on. Alerting devices work by using flashing lights or vibrating pagers to notify one of sounds they might not hear.

Accessible GPS devices such as the Trekker Breeze help people navigate independently, by providing information on where they are and what is around them as they travel in their community.

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2-Hand Manual


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