Deaf blindness

"Being deaf blind is like being deep underground, where there's no light or sound. At first I had difficulty breathing, but after a while I convinced myself that there was plenty of air. I was able to breathe again in that suffocating silent darkness."

These are the words of Yolanda de Rodriguez, Woman of the Year 1998, Colombia, who lost her sight and hearing traumatically 26 years ago.

What is deaf blindness?
If deaf blindness could be described in two words it would be "isolation" and "chaos".

It's a unique sensory disability of combined loss of hearing and vision that significantly affects communication, socialisation, orientation and mobility, access to information and daily living.

Hearing and vision are the major channels through which we receive information about the world in which we live. People who are deaf learn primarily through using their vision, while people who are blind learn primarily through using their hearing. When there's a loss of both these senses, the information that's filtered through may be unreliable and confusing, and can create a very chaotic and isolating situation for the person who is deaf blind.

Deaf blindness is a severe functional impairment that affects the life and development of the individual in almost all areas of communication and social life. Speech and language development as well as mobility is seriously affected.

Not only is the person’s ability to move around in the environment limited, but the ability to survey and monitor events in the surroundings is also highly restricted and feelings of lack of control may cause anxiety, fear and startle reactions when people approach them unexpectedly or when other phenomena occur nearby. The senses of smell and touch are then used as additional source information for localisation and identification.

People who are deaf blind are individuals – no two people are affected in exactly the same way with the same degree of vision and hearing loss. Some people are born deaf blind; others become deaf blind later in life, either progressively or through trauma or illness.

The main causes of deaf blindness are congenital rubella syndrome, Usher syndrome and ageing. Deaf-blind persons can come from the blind community and lose their hearing later on, or vice versa.

Almost all people who are deaf blind have some degree of usable hearing and/or vision. Some people have additional disabilities – physical, intellectual or emotional. As a result, the deaf-blind community is a varied one.

Deaf blindness is a rare condition, affecting about 100 – 150 persons per million. In South Africa, this amounts to about 4 000 – 6 000 deaf-blind people, most whom have not yet been identified:

• About 4 500 are adults (90%)
• 3 500 are older than 60 years of age (70%)
• 500 are children (10%)
• 1 000 are congenitally deaf blind (20%)

Many people who are deaf blind use unique methods of communication. Some of these methods include:

Tactile sign language

• Hand-over-hand signs: feeling the hand movements of the person signing.
• Short-cut signs: tactile finger spelling supplemented by some signs which are made in the palm of the hand.
• Co-active signs: making the signs with the person.

Sign Language (South African/American/Swedish etc.)
This is the natural sign language of the deaf community, which can be read by people who are deaf blind, using the hand-over-hand method:

• Tracking: holding the signer’s wrist(s) to feel the movement or to keep the signs within visual range.
• Visual frame or close-vision sign: signs are made within a small area in front of the upper chest and within close visual range of the person.

Tactile finger spelling
Finger spelling received on the palm.

Braille
This is a written form of communication based on an oral language. A system of embossed dots is read with the fingertips. A Braille system can also be used on the hands, using three fingers on each hand to represent the six dots of Braille.

Tadoma
This is a tactile method of reading speech by placing the thumb on the speaker’s lips and the other fingers on the speaker’s neck.

Technical devices
These include hearing aids, cochlear implants, FM systems, vibrator systems, large print and Braille output computers and telebraillers.

Other

• Object-symbols: use of real objects to represent activities, for example a spoon could represent lunch.
• Physical cues and gestures, e.g. shoulder shrug, pointing, thumbs up.
• Communication boards or books: pointing to pictures, symbols, words or objects to communicate.

People who are deaf blind can learn to their individual potential if given the appropriate support and opportunities.

Source: NAP, deafblindsa.org

- (Health24, September 2008)