Jane Cordell on deafblind awareness week.

Do you know anyone who is deafblind?  

Most of us don’t and I’m certain most of us would find it difficult to conceive of what it is like to be deafblind. 

Can you guess how many deafblind people there are in the UK? And how many specialist interpreters for deafblind people there are? 

The answers may shock you. 

The national charity, Sense, reports that there are 435,000 deafblind people in the UK. It expects this figure to reach 635,000 by 2035. That is about 1% of the population. 

Unbelievably, there are currently only 8 (yes, 8!) people who are qualified to support deafblind people. This means that for every each interpreter, there are 54,375 deafblind people. What is even more shocking is that across the entire country there are no training courses available for people to qualify in these vital skills. 

Crazy, isn’t it? How has this situation come about?  The day this article is published, 27 June, is Deafblind Awareness Day so I thought I would try to find out more. 

In 2024, Result CIC had the pleasure of working with Eric Griffiths who is deafblind. I caught up with Eric recently and asked him what the reality was like when he needed to access a meeting or information. He said, ‘It’s awful when I attend meetings, they can always get deaf support but not for me as a deafblind person. And unfortunately if they do find a deafblind interpreter, that one visit can take up the entire year's budget. We need to address the chronic shortage of deafblind interpreters and start training more.’ 

Apart from the lack of interpreters, social and communication systems are often inaccessible to deafblind people. Paradoxically, a group which could have greatest need of support, may not even be able to register those needs without for example, appropriate IT access set up.  

Something Eric highlighted when we worked with him was the extreme isolation of many deafblind people. He mentioned trying to develop a local network to connect with other deafblind individuals. However, he was told that due to GDPR/confidentiality rules he could not be given any personal information. While we all understand the need for privacy and respect for our data, such rules can backfire badly when they prevent a highly vulnerable group being able to access basic services and human contact, both of which can boost quality of life and well-being. 

For a different perspective on this, I spoke to Lesley Weatherson, Director of Lipspeaker UK. Lesley explained why she chose to train in deafblind support. 

I was keen to learn more about the extreme shortage of qualified communication support for deafblind people, I spoke to Lesley Weatherson, Director of Lipspeaker UK, about available support for deafblind people. 

I started by asking Lesley about the very poor provision of deafblind communication professionals and lack of available training. She said, ‘The current registration system for communication professionals is being reviewed but the process is too slow. This must improve. With an ageing population, presbycusis (age-related hearing loss) and acquired blindness means demands for professional communication support will only increase.’ 

Already a lipspeaker who provides communication access for deaf people who lipread, and a qualified BSL interpreter, a chance meeting witha deafblind woman some 10 years ago  inspired Lesley to extend her skills further so to be able to support her. Consequently, she qualified as a communicator guide. When supporting deafblind people, Lesley uses a mixture of tactile communication, haptics (tactile feedback), BSL (British Sign Language), the Deafblind manual alphabet (spelling letters on the person’s hand) and lipspeaking.  

Active in the NRCPD – the official voluntary register for qualified communication professionals for deaf and deafblind people – Lesley joined a working group to improve the number of interpreters for Deafblind people. Unfortunately, she says, that despite their efforts, little progress has been made so far. 

On a more upbeat note, many deafblind people develop exceptional resilience and determination; Eric is a great example of this. Having secured a new work role. I asked him to tell me about it:  

 ‘My friend Elaine and I are now officially, fundraising co-ordinators for Guide Dogs for the Blind Salford - so we need to start thinking of ways to fundraise.’ 

I took that as a challenge! I am delighted to say that one of my wonderful team of lipspeakers, Laura Bradbury and I have decided to enter the Bury 10K in September to fundraise for the Guide Dogs and Sense. Look out for details soon of how you can support us. 

We are what we do and we love what we do.