What is deafblindness?
Deafblindness is a unique and isolating disability.
It results from the combination of hearing and vision loss or impairment. Some of the most common causes are Rubella, CHARGE syndrome, Usher syndrome and ageing.
There are also different forms of deafblindness, which means people can experience it in different ways. Most people with deafblindness have some hearing or sight, or some hearing and sight.
- Congenital deafblindness is when someone is born with a condition or conditions that affect their sight and hearing.
- Acquired deafblindness is when someone loses their hearing or sight later in life.
- People with Usher Syndrome are born deaf and develop retinitis pigmentosa (tunnel vision) when they are adults.
Deafblind Australia believes fostering a respectful, person-led understanding of the complexity of each deafblind person’s culture, self-identification and lived experience of deafblindness is important for communication, language and learning.
Deafblind people are diverse
The Deafblind community is very diverse. Its members have varying degrees of vision and hearing impairment and come from diverse cultural backgrounds. Some people live with multiple or complex disability.
We have noticed that most Deafblind people in Australia identify in one of two main ways:
- As a person who is born blind and loses their hearing as adults. This group is culturally Blind and often continue to use speech as their main communication method and use hearing devices.
- As a person who is born deaf and lose their sight as adults. This group is culturally Deaf and use sign language to communicate.
A person with deafblindness may strongly identify with the Blind culture or the Deaf culture, with both or with neither.
Profoundly deaf and fitted with a harness containing two large microphones the size of small, thick coasters, the harness went over my head with the speakers on my chest and strapped at the back, with two speaker wires trailing up to my ears where they were attached to small earpieces that sat in my ears.