Did you know that if someone is walking with a white cane with a red stripe it means they are deafblind?
Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. This means that deafblindness is a distinct and unique disability, more than sight loss and hearing loss combined. Sometimes it is referred to as Dual Sensory Loss in older adults.
Research by The Alliance suggest there are between 30,000 and 65,000 people in Scotland who might be living with a sight loss and hearing loss.
There are a wide range of experiences of deafblindness depending on many factors, including the age the person was when they developed sight loss or hearing loss, which sense was lost first, whether they are a British Sign Language user, and how much sight and hearing they still have.
Approximately two thirds of people who are deafblind are older and have developed sight loss and hearing loss as they have become older. They may not identify themselves as being deafblind but describe themselves as having sight loss and hearing loss. Even though they might not describe themselves as deafblind, they would still meet the definition of deafblindness.
Most people with age related deafblindness or dual sensory loss still have some sight and/or some hearing – very few people have no sight and no hearing.
Many people who are deafblind will be able to communicate with you if you use clear speech. Follow these basic tips to help you speak clearly.
• Introduce yourself, explain who you are and what you are doing.
• Ask them what will help with communication – everyone is different and they know what works best for them.
• Face person, make sure your face is well lit and not in shadow and get their attention before speaking.
• Speak clearly – you may need to speak slightly slower and pause to allow them to process what you’re saying – don’t rush them.
• Reduce background noise.
As part of Deafblind Awareness Week, we would like to raise awareness of Usher Syndrome, an inherited condition that causes deafness or hearing loss and Retinitis Pigmentosa (RP) or commonly known as tunnel vision, which usually starts in childhood or teenage years.
People with Type 1 Usher Syndrome are born profoundly deaf and grow up as a Deaf sign language user. RP can become apparent in childhood or in their early teens, and they often have problems with balance. As their vision deteriorates, which is the nature of RP, communication and socialising become increasingly difficult. They may rely on tactile forms of communication including Deafblind Manual or hands on signing. Deafblind manual is similar to the British Sign Language fingerspelling alphabet, but letters are spelled onto the deafblind person’s hand.
Hands on signing means the Deafblind British Sign Language users places their hands over the hands of someone who is signing to them to understand what they are saying.
Watch this short video, made by Janette who has Usher Syndrome, as she tries to communicate with her husband, who is also a Deaf British Sign Language user, and with her friends.
We worked with Janette to add the subtitles. As Janette is sign language user, the subtitles reflect what her stream of consciousness might be. They are designed to help you understand her experiences, rather than capturing what she is saying.
Thank you, Janette, for sharing your experiences.
Other types of Usher Syndrome include being born with hearing loss and developing tunnel vision (Retinitis Pigmentosa) in teenage years or early 20s, or being born with normal hearing that deteriorates as the person gets older sometimes in childhood, sometimes in adulthood. RP starts later on, and there can be accompanying balance issues.
If you or someone you know is living with sight and hearing loss, and would like some support please get in touch (we provide services in Aberdeen, Angus, Dundee and Moray).
