An all-too-familiar story

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Colin, one of our deaf-blind friends lives about half a mile from his local town centre. There are roadworks throughout the town causing congestion and a large build up of traffic at most times of the day. Colin has just started using his white long cane and has made this journey lots of times before. He described a recent experience.

“I was working in to town as usual and went to cross the road via my usual crossing. I pressed the button and waited… nothing happened. Pressed it again, same result. I did not know at the time but the crossing system had been switched off as it interfered with the roadworks traffic controls and a black bag had been placed over the lights. After waiting for some time, I tried to cross the road by waving my cane in front of me but was unable to do so due to heavy traffic and motorists failing to let me cross.”

“Fortunately a good Samaritan came to my aid. A woman, I never found out who she was, standing on the opposite side of the road saw my dilemna. She marched out in to middle of the road, held out her arms and stopped the traffic.”

This highlights just one of the problems that our friends encounter on a day to day basis and highlights the need for greater awareness all round. It also underlines the need for more trained deafblind aware volunteers to support people like our friend Colin.

Brian’s story

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Brian took early retirement a couple of years ago. Volunteering for Brian provides him with something to do that is stimulating, but above all else, means he can “help others make the most of their lives.” At the local association where he volunteers Brian drives the minibus for the activities group and sits on their funding committee. Brian heard about our training:

“I was interested partly because I was intrigued about the situation facing a deafblind adult. I then did your training in deafblind awareness and guiding which opened my eyes.”

“You seldom come across disability. Like many people I thought being blind meant having no sight at all, being deaf meant you could not hear anything. What grabbed my attention was the wide range of abilities that visually impaired people have despite their condition. What has been so rewarding has been the way people respond to your help. Doing this work makes you realise how many barriers there are for blind, deaf, and perhaps even more for deafblind people.”

“The training has broadened my mind and made me reflect on the things that could cause issues or make communication more difficult. I have learnt not to assume and that every blind, deaf, deafblind person is the same.”

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.”

Margaret’s Story

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Margaret is retired but firmly busy! She has an MSc in Education and many years of teaching practice; she also worked for the National Foundation for Educational Research as a Senior Research Officer. Her career has brought her into contact with deafness and blindness on a number of occasions.

Perhaps it is no surprise that Margaret now devotes considerable time and effort as a volunteer supporting older people, older blind people, and more recently older deafblind people through our sister In Good Hands (IGH) project.

Margaret received our deafblind awareness and deafblind guiding training in August 2012. Almost immediately and quite by chance she was buddied with a deafblind adult in her home area. “The training gave me the confidence and practical skills to guide and support a deafblind adult. I didn’t know a lot about deafness prior to the training and that also helped.”

“Through my experience at the local blind association and with the skills from the training I now work with a man who has been blind since childhood. His hearing is also getting worse to the extent that he now wears a hearing aid and has a cochlear implant. His wife works tirelessly to support him and in a way I hope the time I give helps them both. They are a wonderful couple.”

“At Age UK I support older people who are at risk of becoming isolated. Many have some degree of hearing or sight difficulty. I hope that the deafblind training I received can also benefit the people at Age UK.”