Deafblind Voices

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Key to making a difference is how well we listen. It is all about how well we learn: learning how to improve support for older people who acquire deafblindness as a result of living longer lives.

At the heart of our mission is the knowledge that too few people know anything about the condition, including most professionals, and far too many older people become significantly socially isolated soon after the condition develops that can lead to health and wellbeing problems.

“I don’t answer the door as such, only by appointment. I am worried now about letting strangers in – your anxiety is heightened when you lose your sight and hearing. I am anxious about using ATMs in case someone is watching me. I have become a recluse frightened to go out alone for health and safety reasons. I have become very depressed.” A deafblind man who lost his sight and hearing suddenly.

Key to bridging the gap is our idea that older people are ideally placed to support their deafblind peers as volunteer buddies. But only if they are trained and qualified to the extent that they are confident and know how to support an older deafblind person. And when their own sight and hearing starts to deteriorate they will be better placed to cope themselves.

“You have made me aware that deafblindness could happen to me, or my husband too. So the more people know about the condition then the more people there will be who can help us…The connection with ageing made me realise deafblindness is not “their problem”, it’s “our problem” due to the growing numbers of people who are living much longer lives…but you haven’t made me worry anymore about getting older, it has helped me to think more carefully about the future.” A volunteer after receiving our training.

Our project is interested in what an older person who is deafblind has to say about how they are supported and what their experience is before and after they are paired with one of our trained volunteers. Equally we need to hear from our new volunteers as they experience the training and then support an older deafblind person.

“When I heard more I thought it (our work) is a good thing because you need help like this when you lose your sight and your hearing. The most important thing is the people support, the personal support. This is more important to me than any other type of support.” A deafblind person thinking about what it might mean to have a trained HiVisUK volunteer.

“If I was newly assessed and there had been a HiVisUK then, that would be wonderful – my life would come back. It would mean I am enjoying life. It would help my wife.” A deafblind person thinking about what it would have meant if there had been something like HiVisUK when his deafblindness first developed.


Rob’s Story

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Rob has been volunteering for over 20 years. His first volunteering role was as a youth and community volunteer in North Somerset. After volunteering to work with troubled young people in North Somerset, Rob then volunteered for the Manic Depression Fellowship (now Bipolar UK), and Mencap Gateway. Since moving to Northumberland he has continued volunteering. This includes being a telephone befriender with a local Blind Association’s Sight Line, a befriender with their Social Eyes group, plus numerous church and community groups.

Rob developed Retinitis Pigmentosa as a young boy and is now totally blind. He undertook our deafblind awareness training and feels the training has certainly raised his awareness of deafblindness.

“Some of our groups include people with both sight and hearing difficulties. I am now more aware of the deafness aspects than before. For example, we used the training to help us find a more suitable venue for one of our groups. Some members were finding it difficult to take part when there is background noise.  We found a pub with good natural light, which helps some of the group to see our faces better, and where the music is really discreet so we can hear each other better. It’s the practical tips from your training that have really helped.”

“One of the things I really enjoy about volunteering, even when it is telephone or internet based, is sharing good stories. With the training, if I am asked to buddy a deafblind person I will now be more confident and at least we will be able to have a good conversation using deafblind communication.”