This is a film about people in Scotland who live with the condition deafblindness. Deafblindness is not simply a combination of hearing and sight loss rather, it is a third, unique condition that will impact an individual's communication, information and mobility. People can be born deafblind or acquire deafblindness later in life and both congenital and acquired deafblind people will require specalist services, and skilled communication partners to make meaning of and access the world. No two people will experience deafblindness in the same way and every deafblind person has a unique story to tell...
Issy: Hi, my name is Issy McGrath.
John: Hi there, My name is John Whitfield.
Colin: My name is Colin Hetherington. I'm actually a deafblind person.
Andrew; Hi. I'm Andrew. I'm a 22-year-old deafblind student currently studying Englishcreative writing.
My guide here is Ann-Marie and...
do I let Ann-Marie introduce herself?
John: Okay, so how far do you want me to go back?
I'm 66 now, basically, I grew up as a young child who was diagnosed as Deaf- being Deaf at the age of five.
Andrew: I was diagnosed with Retinitis Pigmentosa when I was about five which is a genetic, disease that basically caused the rapid deterioration of sight in both my eyes. This means I just have light perception, and then a few years on, I got diagnosed with a hearing impairment as well. which is also linked font to the Retinitis Pigmentosa.
Issy: To be honest, thought that I was kind of going off my head a bit. I seemed to be struggling to find my way home at night time. You know, I seem to be struggling to find things. So, if I dropped something on the floor... I couldn't find it again.
When I was doing this course, I obviously had to study a module in audiology and I happened to come across a certain amount of information that was starting to make me think, wait a minute. I think I have an idea of what may be happening to me in my life.
Colin: I was diagnosed with a thing called RP - Retinitis Pigmentosa where I walked into a tree in the garden. I was playing football with my mates and I turned round, spun into the tree, broke my glasses and cut my eye with the lens.
Right after that, my mother dropped a pencil on the floor, and she asked me to pick it up, and I couldn't see the pencil because it was outside my peripheral vision.
John: I started experiencing problems seeing in the dark. I was getting a bit more clumsy and bumping into things, so I was a bit concerned about that.
I went along to the doctors. They sent me to an ophthalmologist down in St Albans, and basically they told me I had this condition called Usher Syndrome, Usher
Syndrome Type Two.
And he said, basically, you will be totally blind by the age of 40. There's nothing we can do. And basically just left the room.
So this this diagnosis absolutely threw me. To be totally honest. I mean, this is me with my future geared up toward being a vet. Okay. You know, I was thinking about relationships and how am I going to find a partner? Thinking about my education?
Could I still continue with my education to become a vet? I was thinking about everything that's about your identity. My identity was fixed and then to be told I was going to lose my sight at the age of 40... What was the point..?
Andrew: My aspirations for the future is basically to keep going with my creative writing, hopefully get published. I have lots of ideas for novels and stuff. So I maybe go continue with my academic journey. I've got a place to study creative writing at Master's level, and yeah, that's basically where I am at the moment.
John: I've met many, many interesting deafblind people over my years, some of them set me challenges. So, one gentleman I knew, he did Kilimanjaro, the first deafblind person to do Kilimanjaro... So I thought, well, what can I do to compete with that? So
I ended up doing the Great Wall of China...!
Issy: If I'm making a cup of tea, you know, I put the kettle on and fill it up. But, I’m running my fingers along the edge of a sink.
I'm in the sink, put my hand on the tap, fill up the kettle a little bit, follow my way back, every single bit I've done, I've been touching something...
Then I put the mug on to the draining board And I put my tea bag in
I fill up the cup, but I spill it and the reason I spill it is because...as the water pours over the side and on to the draining board cools off enough for me to touch it and realise my mug is full. And I pour the milk over my finger, because I've got a good estimation of how much is going in.
That's me got my perfect cup of tea. But the one thing that will always happen is I make...I'll pour in the kettle, the hot water and everyone goes, my God, you're spilling it! You are spilling it!
Oh my God, it's the end of the world! I've just spilt the tea!
And when they hear me say...I meant to spill my tea.
It's deliberate. It's how I know it's full.
And if you just wait two seconds, you will find out that I can make a perfect cup of tea.
It's frustrating for me on a daily basis when I find that people are interpreting my behaviour one way when in actual fact, I'm thinking in my head, something entirely different.
Andrew: I would say mobility for deafblind people is extraordinarily hard and complex and touch is one of our only sure ways of making sure where we are, whether it's just by feeling our way across a surface or by identifying something by touch.
John: So deafblindness is a spectrum. So, it ranges from what we would call a wee bit of sight and a wee bit of hearing, right through to what you might consider completely deaf and completely blind. In our community, probably 6 or 7% are completely deaf, completely blind, with no sight, no sound.
Colin: The uniqueness of deafblindness is huge. One sense being lost is hard enough. Two senses where one cannot compensate for the other. It's a unique thing. It's something we really need to focus on. We need specialists to actually deal with that situation.
Andrew: In my life so far, I've always struggled with the fact that a lot of people think it's just a case of being blind with a hearing impairment, or vice versa. But for me, the main difficulties arise when both of those disabilities interact with each other. And I think this is especially true in education, because there are schools with a Deaf unit and schools with a visual impairment unit, but as far as I know, there's none that deal with both. And the specialist schools, like one I've been to, are rare. They're also not, they're also not open to all deafblind individuals, I believe.
So that's one example that I think having, having that definition of deafblindness is important.
Issy: To have a definition of deafblindness in Scotland. For one, it is just my right to be identified as a deafblind person.
But more to the point, I don't live a single-sensory loss life. I live a dual-sensory loss life I'm not just blind or deaf and, trying to explain to people -I'm not a game of two halves.
I'm not somebody who's deaf on her own or blind. I'm deafblind.
All of that is part of me. That is the whole of me, that is holistically me, a deafblind person. And it's very frustrating when you phone up Social Work or Care Services and all that kind of stuff, and all of a sudden you find yourself standing in two queues.
I stand in one, to get everything I need from the deafness side of things, and then I stand in another, to get everything from the blindness side of things, what is going on? Why are we in two queues? Two? Spending double the amount of time, to get resources and so on. Why are we doing that?
Why are we so left in a place of, well, just go over there and you'll be fine, and then you can go over there and you'll be fine. That's not who we are. We are deafblind, and we need to stand in one queue to get what we need. One queue.
Just like everybody else - one queue. So that at the end of that queue, there's somebody who is able to communicate effectively on both sides of the coin that are in my life- deafblindness.
And I always think it's really crazy that, you know, government don't embrace that because if they actually did Train up people to deafblindness...You get two for the price of one!
...and nobody thinks of that, you know, and it's... it's disappointing. That my identity has not been embraced. And it is my right to be who I am. And I......am deafblind.
Colin: The... talk of being labelled as deafblind... I don't know any other way to label it. It's not a label. It's.. What other way would you describe it? I'm deaf and I'm blind. That's the top and bottom of it. I'm deaf and blind. For someone to say Dual sensory, you can't even call it dual-sensory loss. Because you've got five senses...
So when you say you’re deafblind, it's those very two senses that's affected.
John: I think for me, the, the ultimate, progress would be if we could obtain a definition. Through that definition, we're going to ensure that we're going to have better awareness. It's not about labelling. It’s about a way to having awareness of the difficulties, awareness of the barriers that are not always natural, more often than not are created by people.
If we can remove these barriers, then that would be a fantastic part of that future. It would be wonderful to have everybody having equal access to...communication supporting their particular format, whether it is using a Guide Communicator, whether it's using an interpreter, whether using a translator, or a whole gamut of different ways of communicating, if we have a definition, then that would make life so much better for so many deafblind people out there.
Andrew: For me, I would like to see a future for Scotland where deafblind people, no matter what stage of life they are in, or what city or town they come from are able to access the same level of support. And I want that Scotland to be able to give the support that every deafblind person needs to live an independent life, to not feel that their dreams are impossible because of their deafblindness, and to feel empowered enough to go forward and do what they want.
#FLUTE PLAYS “DARK ISLAND”
John: My name is John Whitfield. I'm a biker. I'm a traveller.
I'm a horticulturist. I’m a teacher. I’m a husband.
I'm a proud father. I'm a metalhead.
I'm a traveller. I'm a risk taker.
I'm a...Oh Crikey! I'm kind of running out of words!
But I think overall, I'm a very interesting guy. I've lived a very rich, full life.
And I love my whisky. I love my drinks. I love my friends, my colleagues, my companions.
I just love life. Life is there to take.
So I'm proud. I'm Scottish and I'm deafblind.
Colin: I am Colin Hetherington. I’m a husband. I'm a father.
A Guide Dog owner. A cane owner, even. I wear hearing aids.
I wear glasses.
I live in Scotland and I'm deafblind.
Issy: I’m Issy McGrath. I love travelling. I'm a very competent musician.
I enjoy swimming. I love going out with my Guide Dog.
I love reading my audiobooks, or should I say “listening”
through my hearing aids to audiobooks. I love socializing.
I love a good drink in the pub. I am Scottish. And I am deafblind.
Andrew: I am Andrew. I'm a writer. I'm a poet.
I'm a drummer. I'm an actor. I'm a joker. I'm a dog walker. I'm Scottish and I'm deafblind.
Currently Scotland lacks a legal definition for deafblindness. Projected estimates suggest that around 31,000 people in Scotland live with the condition. We are calling for the formal adoption of the Nordic definition of deafblindness in Scotland paving the way towards an inclusive and accesible world for all. This is not about 'labelling' people or the creation of further barriers rather it is about the recognition of human rights, identity and equality. It is about the creation of appropriate services and support. Ensuring that every deafblind person in Scotland can live their lives with agency, dignity and potential. It is about recognition.
With thanks to- Andrew Pettigrew, Colin Hetherington, Issy McGrath and John Whitfield.
Narrated by Gavin Mitchell. Filmed, produced and directed by Eilidh Robertson, Jon Reid and Nicola Hughes. For more information on deafblindness and the call to adopt the Nordic definition of deafblindness in Scotland Please visit www.dbscotland.org.uk
"Alone we can do so little;
together we can do so much...
The best and most beautiful things in this world
can be seen or even touched-
they must by felt with the heart"- Helen Keller