John Whitfield Shares His Story on RNIB Connect Radio

We are delighted to share a recent interview with John Whitfield, Participation & Training Manager at Deafblind Scotland, who has been a driving force in our organisation for over 25 years.

In the interview with Jennifer Murray on RNIB Connect Radio, John speaks candidly about his journey with Usher Syndrome, living with hearing and sight loss and how these challenges shaped his education, work, and life. John also reflects on his remarkable journey with Deafblind Scotland — from being involved in the charity’s early days to helping lead national awareness projects like Touching Lives, and even trekking across the Great Wall of China, Machu Picchu, Grand Canyon and Iceland to raise funds for our community.

John’s dedication has helped shape the culture and direction of Deafblind Scotland for decades. His passion for training Guide Communicators, raising awareness and empowering others has left an incredible legacy as he prepares for retirement this October.

🎧 Listen to John’s full interview here:👉 https://audioboom.com/posts/8737852-interview-with-john-whitfield-deafblind-scotland

Thank you

John — for everything you’ve done and continue to do!

Interview Transcript:

You're listening to an RNIB Connect Radio podcast.

You're listening to RNIB Connect Radio. I'm here today with John Whitfield from Deafblind Scotland, who is going to talk about his job, despite having a hearing impairment and despite being visually impaired. 

Hi John, thank you for coming on to RNIB Connect Radio. How are you?

I'm all good, thank you very much Jenny. Pleasure to be here.

Can you tell me a bit about your sight loss and your hearing loss and how these affect you on a day to day basis?

I certainly can. What I have is a condition that's called Usher, Usher type 2. This is a syndrome that causes deafness from birth.

I was born with a moderate to severe hearing loss, so I didn't go to a deaf school. Both my brother and myself had places at Mary Hare Grammar School for the Deaf. My mother at this time didn't want to go to a boarding school, so we ended up going through a mainstream route.

I'm not a sign language user. I wear hearing aids and I lip read. So my formative years of going to school was as a deaf person, if you like. And then in my late teens, I developed a sight loss, and this was a very gradual progressive sight loss called retinitis pigmentosa, or more commonly known as tunnel vision. So I was aware of my loss from the sides of my vision, if you like, and the first symptoms of that are problem seeing in the dark, adjusting to light and dark. So this is when I was about 19.

Up to that age, you know, education was okay. I went to school and then on to college. However, I do feel that when I went to school, I was in a very small rural school in the Yorkshire Dales so classes of 15 were quite big. So I think in this day and age, if I had gone to something like a class of 40, then I would have probably struggled more. But because of the small class, I was able to engage very efficiently, if you like.

The hearing loss is always a problem. They're struggling with the hearing and struggling with the acceptance. And often times to deal with the barriers or other people not understanding my hearing loss.

So quite often, maybe slightly ostracised or picked on, you know, and made fun of. But I kind of dealt with that. You know, I was big enough, I was ugly enough.

I used to play sports, I played rugby, I played motorbikes. So all these things, you know, you had different peer groups. So you mixed with people with similar sort of interests.

And then as my sight decreased, it became more problematic thinking about work. So that's kind of my sight, my communication, my ability to get around was limited as well, because I had to give up driving, which is a big issue.

I understand that you've worked for Deafblind Scotland for 25 years in various roles. Can you tell me about some of the personal highlights you've had over the years?

Yes, working at Deafblind Scotland for the past 25 years, I've actually been involved with Deafblind Scotland for nearly 30 years, because I was a student at Dundee University, a mature student, and I was studying psychology. And I was looking at the cooking strategies of people with a dual sensory impairment. And I got involved with what then was called the Deafblind UK, Scottish branch.

And there was a lady called Duna O'Malley, who was the chief exec at the time. And I was asking if I could interview various Deafblind people and how they cook with their situation. And it was actually through that, that we formed a breakaway to form Deafblind Scotland.

And I graduated from university at the year 2000. And Deafblind Scotland, at the same time Scotland, devolved from England. Deafblind Scotland separated from Deafblind UK and formed their autonomous group.

I was on the board of directors at the time, because it was a new organisation. And within three months, they grew so rapidly that Dreena asked if I would step away from the board and actually join Deafblind Scotland as a working person. So from there on, I've been involved with so many different projects.

You know, one of the big ones was called Touching Lives. It was a national lottery, so managing that and training up Deafblind members to go out into schools and talk about Deafblind awareness and teaching Deafblind manual, a communication method that's done onto the hand, so people could engage with Deafblind people. And now what's called a training manager and participation manager.

So wearing two hats for Deafblind Scotland, I'm Involved with training of the Guide Communicators. So the Guide Communicators are the people who will enable Deafblind people to get out and encourage them to be independent. And we have to teach the Guide Communicators different communication methods and how to interact with Deafblind people.

So that's incredibly rewarding, and particularly when you see Deafblind members out and being able to do things that they possibly couldn't do for themselves. Another highlight in particular for me was we were a set of old offices and flats all combined into one jumbled up area. The dream was always to have a new building.

So for that new building, we had to raise a lot of funds. So myself and a number of Deafblind people did various activities. So I was very fortunate in the fact I could do overseas treks.

So my first trek was in 2010 and that was at the Great Wall of China. That was 15 days trekking over bearish terrains and very difficult terrains and extremely rewarding. Two years after that, I did the Machu Picchu, which is the Inca Trail in Peru.

Again, that was a real experience. And following that I did the Grand Canyon, living in the canyon among the Native American tribe, and so actually camping with them. Another fantastic experience at the same time, very challenging, lots of barriers, walking in the dark, different terrain.

And then finally, the last one I did was Iceland, seven years ago. And again, that was very difficult, walking where the lava trail, where the volcano exploded. And again, totally different terrains, but very challenging.

I have to say, for the benefit of anybody listening, I didn't do this on my own. I went with Guide Communicators to support me and inform me and help me where the difficult situations were. But nevertheless, it's still pushing the boundaries.

The 25 years I've been with Deafblind Scotland have been incredibly varied, incredibly interesting.

Can you tell me about your current job at Deafblind Scotland?

Interesting question, because my current job at the moment, as I say, I wear two hats, I'm Participation Manager and Training Manager at Deafblind Scotland. But incidentally, I'm about to retire at the end of October. After my 25 years of working for Deafblind Scotland, at the moment I'm down to three days a week. And then at the end of October, I'll stop working, but I'm still going to be heavily involved, whether it be on my even go on the board or getting involved in various representation projects with Deafblind Scotland, volunteering perhaps, or also considering being guide dogs, as well as any visual impairment organization. My job is very varied. Every day is different.

I might be doing some awareness training, I might be doing a talk, a presentation, or sitting on the panel, going to my first meetings, trying to influence people to understand about intuitive communication and what have you.

What type of support do you get to enable you to do your job?

When I first started at Deafblind Scotland, I was pretty independent, but over the years, my sight gradually got worse and worse. What I have is retinitis pigmentosa, so it's like tunnel vision. So that field of vision has been getting narrower and narrower and narrower.

So now at the age of 67, I've got my left eye, not quite useless, but it's not brilliant. And my right eye, I've got about 4% of vision left in it. I can see my computer screen, I can read, but in the night, I'm totally, totally blind.

I've got no vision whatsoever in the dark. So the guy comes into his own, literally. But so roughly about 20 years ago, I got involved with Access to Work.

Access to Work has been funding me to have a guy communicator for approximately 20 hours a week to support me.

How can people get in touch with Deafblind Scotland in general?

In many ways. I mean. We have a website, on that that you can access, Deafblind Scotland. We have email with information, where if anybody wants to ask any questions. You can Google it at dbscotland.org.uk.

You can email individuals directly because we have various avenues of support. We have activities where Deafblind members can come along.

Thanks John for coming on to RNIB Connect Radio.

That's been my pleasure. Thank you very much.

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