DeafBlind Association (NSW)

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Frequently Asked Questions

What is deafblindness?

Deafblindness is a dual sensory impairment, which significantly affects communication, access to information, learning and independence of a person who is deafblind. 90% of the information we receive is through our ears and/or eyes, so a Deafblind (DB) person is only receiving 10% of what is happening around them.

Are there many people in Australia who are deafblind?

It is estimated that there are over 2,500 Deafblind people aged 18-65 in Australia, of which about 500 are in NSW. This could be multiplied by 10 if the population over 65 was taken into account. The figure of .004% of the general population has been consistently reported in all Western countries for many years. However deafblindness is known throughout the world as the most isolating of all disabilities and remains a hidden population, so it is likely that nowhere near this number would be identified and receive appropriate services. A study carried out in England in 2005 put the percentage much higher at .04% of the population, and revealed the alarming fact that only 5.7% of these people were provided with communicator/guides.

What are the main causes of deafblindness?

There is a difference between being born deafblind and acquiring it later in life. Some causes from birth or early childhood (congenital) are, Rubella Syndrome, CHARGE Syndrome, early premature birth, Encephalitis, Meningitis, Cerebral Palsy, birth trauma and alcohol and drug dependency of the mother.

Adventitious or acquired deafblindness is often due to a genetic condition where both parents carry a recessive gene causing Ushers Syndrome. Ushers I is when the person is born deaf and grows up in the Deaf community using Auslan (sign language) to communicate. Ushers II is when the person is born hearing impaired, and grows up using hearing aids and lip reading and speech. Even though these syndromes are not related genetically, in both cases the person loses sight from puberty onwards and communication becomes more difficult with vision loss.

Some other causes of vision loss in deafblindness are accidents, illness, macular degeneration, brain tumours and aging.

Does a person need to be totally deaf and blind to be considered deafblind?

The combined loss of vision and hearing is exponentially greater than the loss of either sight or hearing, as the person cannot use one sense to compensate for the other. Therefore, the loss to whatever degree will impact disproportionately on the person’s life.

How do Deafblind people communicate with others?

Predominantly through an interpreter (in Auslan if the person has grown up in the Deaf community). They place their hands over the interpreter’s/other person’s hands and feel the signs or use tactile finger spelling, where the interpreter/other person fingerspells onto the fingers of the Deafblind person. In reverse the deafblind person signs or fingerspells as a deaf person would to the sighted person.

Are DB people able to go out alone?

Some people manage this with a white cane or guide dog, with training from professional trainers, such as those from Guide Dogs NSW. However most people are confined to their homes until others take them out, due to the risks involved and difficulty with communication.

Are deafblind people able to attend school when young and learn in later life?

Certainly. Most deafblind children attend special schools for the Deaf or Blind, with emphasis placed on whatever sense is least affected for better access to learning. Often they receive occasional assistance from an itinerant teacher to assist with the other sensory loss. But even with today's advanced technology, deafblind children are not getting adequate schooling. In fact, there has probably been a deterioration over the years, as teachers become busier and are less likely to spend one-on-one time with the child. In many cases, children lose their communications skills after leaving school if they have no-one to communicate with, and this then needs to be re-addressed when they are adults.

People may go on to learn Braille if they didn't learn it at school. They may also gain computer skills with the help of screen readers such as. JAWS. These either read at a pitch and speed understood by the individual, or through a Braille display. Some people use magnification such as ZoomText if they have a little sight. A few deafblind people go on to study at TAFE or university.

It is important to recognise that most deafblind people are self sufficient, enjoy helping others, and have a good sense of humour and love of life. However, they are restricted and isolated by their disability. We therefore need to raise awareness of their basic human rights by providing interpreter/guides so they can take their rightful place in the community.