What is Deafblindness

". . . deafblindness is described as a unique and isolating sensory disability resulting from the combination of both a hearing and vision loss which significantly affects communication, socialization, mobility and daily living."
- Report From The Deafblindness Forum (2001) To The National Disability Advisory Council

The nature and impact of deafblindness is affected by many factors including whether it is Congenital or Adventitious (acquired). There are variations within every group and each person who is deafblind brings individual perspectives and experiences of living with dual sensory loss. No matter the extent of hearing and vision loss, the impact is much greater than the simple addition of deafness and blindness and it may affect all or some of the following:

• communication
• learning
• orientation and mobility
• social relationships
• isolation
• confidence and self-esteem
• independence in daily living skills
• access to information
• access to education
• access to employment
• access to aids and equipment (because of cost)
• access to interpreters

and all can cause fatigue and frustration in dealing with everyday situations.

Frequently Asked Questions

(1) 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.

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

(3) 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 & drug dependency of the mother. Adventitious or acquired deafblindness is often due to genetic condition, both parents carrying 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.

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

No, the combined loss of vision and hearing is not deafness + blindness; it is exponentially greater, 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.

(5) How do Deafblind people communicate with others?

Predominantly through an interpreter (in Auslan if the person has grown up in the Deaf community), by placing their hands over the interpreter’s/other person’s hands and feeling the signs or Tactile finger spelling where the interpreter/other person fingerspells onto the fingers of the Deafblind person. In reverse the DB person signs or fingerspells as a Deaf person would, to the sighted person.

(6) Are DB people able to go out alone?

Some people manage this with training from professional trainers, such as Guide Dogs (either with cane or dog) etc,but most people are confined to their homes until others take them out, due to the risks involved and difficulty with communication.

(7) Are DB people able to attend school when young and learn in later life?

Certainly. Most DB children attend special schools for the Deaf or Blind (with emphasis placed on whatever sense is least affected for better access to learning), often with occasional assistance from an itinerant teacher to assist with the other sensory loss. It is found that even today with advanced technology etc, DB 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 time, one to one, 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 as adults. People may go on to learn Braille (if not learned at school), Computer Skills with the help of screen readers (e.g. JAWS), which either read at a pitch and speed understood, by the individual DB person, or through a Braille display. Some people use magnification (e.g. Zoom Text) if they have a little sight. A few DB people go on to study at either TAFE colleges or University.

It is important to recognise that most DB 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.