24-30 June 2024 marks Deafblind Awareness Week, when people with deafblindness and multi-sensory impairments are celebrated for their achievements and contributions to our communities.
This year’s theme for Deafblind Awareness Week is ‘Connect to Act’, which aims to encourage communities to learn more about the lived experiences of deafblind young people and adults.
Deafblindness is a unique and isolating disability that has a significant impact on an individual's quality of life. The condition is also known as multi-sensory impairment due to the impact on other senses, such as touch, taste, smell, and the vestibular system that controls balance.
Most people with deafblindness have some degree of hearing and sight and they experience deafblindness in different ways, depending on the age at which both senses become impaired.
There are two types of deafblindness: congenital and acquired.
Congenital deafblindness occurs when impairments in both hearing and vision are present from birth. Limited access to experiencing the world through both primary sensory channels in early childhood leads to lifelong developmental, learning, language, and communication delays. Acquired deafblindness is generally when a person loses hearing or sight later in life.
The most common cause of congenital deafblindness is CHARGE syndrome, a genetic condition that affects approximately 1 in 15,000 people. Most people born with CHARGE syndrome have hearing and vision challenges that can significantly delay their development. In addition, vestibular dysfunction frequently occurs which affects balance and orientation in space and general mobility.
Another common cause of deafblindness is Usher Syndrome, a genetic condition that affects 1 in 6,000 people. With Usher Syndrome, people are born deaf and usually develop vision impairment in their late teens. There are three types of Usher syndrome, each bringing a different degree of impairment of hearing, vision, vestibular function, and educational outcomes.
For children and young people with deafblindness and multi-sensory impairments to achieve their highest potential, support from specialist teachers who understand the challenges this complex condition brings to their lives is paramount.
For more information about the effect of deafblindness on children and young people, visit:
CHARGE Syndrome Australasia and UsherKids Australia
Further information about deafblindness in the adult population can be found at:
Able Australia
Vision Australia
Deafblind Victoria
