Deafblindness

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IN TOUCH – Deafblind UK Research

TX:  11.03.2025  2040-2100

PRESENTER:           PETER WHITE

PRODUCER:            FERN LULHAM

White

Hello!

Clip: Emma Blackmore

I love gaming and I had my Xbox adapted so that I can still play. [LIGHT SWITCH BEING TURNED OFF] I have to make sure I have good lighting because too much lighting’s bad, so I just like, close the windows, the curtains. And then I just have to stick my headphones on my ears. [HEADPHONES BEING PUT ON] On the ears now. Also make sure that I’ve got a drink next to me. [MYSTICAL GAME SOUNDS] So, just make sure they’re clear and then, all ready to go!

White

The public struggle enough with the idea of blind people leading full and enjoyable lives, so perhaps it’d double the struggle when they're confronted with the dual disabilities of blindness and deafness; and yet there's Emma, pursuing her love of gaming and technology with gusto. In a moment, we’ll be finding out more about a new research centre which will be concentrating on the challenges posed by various forms of deafblindness and how they can be made easier. But first let's hear more about what life is like for two busy Deafblind women.

Blackmore

Hi, my name is Emma Blackmore, and I was born with Congenital Rubella Syndrome. I’m Deafblind and I live in Bristol.

So here I’ve got my laptop out, I’ve got my headphones ready if I wanted to do a Zoom call for work or stuff. So… [COMPUTER START SOUND] Just loading up. It helps make life so much easier because I can join it to my phone!

Being Deafblind has its challenges to get around and stuff. You have to kind of learn to adjust in ways that are helpful for you. Each person’s different. Each person’s sight’s different, each person’s hearing is different. For me, I use a cane going out and about in the community, which can be tricky because obviously you get pavements kind of raised, cracked or whatever and then it kind of whiplashes you a little bit, so you have to kind of figure out the best routes to take.

So right now, I’m just going to log in to get myself ready. [TAPPING COMPUTER KEYBOARD] It’ll set all the apps up. I’ve got the apps on the screen bigger as well, so I can know where things are and I’ve got like, my pinned apps so certain things I use all the time.

Within the house, I just kind of make sure that I  manoeuvre bits around and I have two dogs, so sometimes they’ll come puddling along and I’ll trip over the dog! I have no peripheral vision at all from one eye and I’m blind in the other. Sometimes I have to have a hearing aid rest. I do recommend that to everyone who uses hearing aids - have a hearing aid rest. It helps.

What I always, always have to have is my headphones, so I’ve got over the ear headphones. They’re big like, they cover the whole ear. Helps me hear a lot better and blocks out any sounds and stuff. So, what I’ll do is I’ll just plug them in - if I can find the plug…

It’s just about finding adaptions and the adaptions could be a simple thing. Like, not even something that is an accessibility tool.

[RUMMAGING] This is the one thing with computers - finding different slots you gotta put things into is very, very difficult!

It’s a lot, but you can live a fulfilled life and I think that's what you have to look at. There is a lot of positives. You can still enjoy to do things. I think when you find out you're Deafblind when you’re a kid, you’re not quite as up to speed with your friends. You kind of think, “Well, I won’t be able to do any of that!” But actually, as time’s going on, there’s adaptions for everything. It helps me and I’m happy to know that technology’s improving today so that I can live a fulfilled life!

Jo Milne:

Hi there! I’m Jo Milne. I live with Usher's Syndrome Type 1D. I was born profoundly deaf, but it wasn’t until I was twenty-nine years old that I became registered visually impaired. Research is so under-funded and it’s something that is very needed - to have a conversation about dual sensory loss in the public domain. For an example, even just a red stripe will signify the hearing loss on a mobility cane or the red and white chequered harness on a user’s guide dog. It is quite astonishing how the public do not know what that means. I mean, I’ve got quite a busy family life, I’m a mum to two children and when I step out my front door, that’s where my challenges start. It is just the sheer lack of awareness around me. Becoming a mother, it took the shine off what was an absolutely wonderful, life-changing experience, because I had to explain to the healthcare professionals what my condition was and what it was all about. Usher’s Syndrome is a progressive condition, so obviously I’ve been losing my sight since I was probably about nine or ten years old. I was just short of my fortieth Birthday when I had the cochlear implants. I was becoming very isolated, I was feeling very cut off from the world. So you can say that I was losing one sense, but I gained another and that is what the cochlear implant did for me. It gave me a better spatial awareness, I could hear footsteps, I had like, a better sense of the traffic around me and it was highlighted just in the first few minutes because it was so, so emotional.

Clip - Cochlear Implant Specialist:

Can you hear my voice coming through both sides?

Milne

Yeah, yeah! [CRYING] Wow!

Specialist

Well done! It is a wow moment, it is!

Milne:

It’s amazing!

Specialist:

Yeah!

End of clip

Milne:

I’d always lived as somebody who was profoundly deaf that was losing her sight. The biggest change was when I had to do like, a re-adaptation. It was like a new identity. I had to leave that identity behind where I was just Jo who was deaf, who was using her eyes. We get very good and we start to adapt to like a new way of living if you like. I think we all have that ability within us. We’re very resilient; I think humans are. There just needs to be more positive representation out there, like the TV, the media. I never had that growing up - to feel that you’re not the only one and you’re not so alone. That there are other people and having very good lives. We are the experts in our condition. So, I think it's about empowering people to speak up about their experiences, whether it’s the individual or the family. And I think the more stories that are represented, then the more chance that we have. There is pioneering research that's happening and I think if we could just put the awareness effort more into the research - yeah, I think that's the ultimate dream.

White

Jo Milne and Emma Blackmore.

There are a number of organisations such as Deafblind UK and Sense which provide many services for people with the various forms of deafblindness so what will be the role of a new centre for education and research at Birmingham City University set up by Deafblind UK? We’ve brought together three experts in the field. Robert Nolan is Chair of Deafblind UK. He was born with deafness and as he’s grown older has developed an inherited form of blindness caused by Usher’s Syndrome. I began by asking Robert, why a new centre and why now?

Nolan

Why now probably because it should have happened a while ago, but the main reason I suppose is the lack of awareness of deafblindness. It is a low incidence condition and for many, people think the solutions in providing better support and services for people who are Deafblind come either from the blind community or from the deaf community. And I think deafblindness is a completely separate condition altogether and I think too few people realise that. I think education and training, we’ve been working well with Birmingham City University since 2019 on developing that and Deafblind people are very much part of it, but where we have seen no progress until recently is in research. Without research and without hard evidence, it’s difficult for us to influence policy, it’s difficult for us to encourage practitioners to focus more on deafblindness as a separate condition.

White

I was gonna say, is that what the problem is - that because there is a duality of disability, in a way it’s difficult to get people to understand what the priorities are?

Nolan

Absolutely - I mean, obviously people who are deaf rely far more on visual acuity. So for example, I have Usher’s Syndrome, which is probably the most common cause of congenital deafblindness. And with Usher’s Syndrome, you are born with a hearing loss - in my case is a severe hearing loss - but you’re also born with the same gene that causes progressive sight loss through Retinitis Pigmentosa. So, growing up, I was a deaf child who wore hearing aids my whole life. Hearing aids weren’t great sixty years ago, they're getting better all the time. I heard bird song for the first time in my thirties. I started to use the telephone in my twenties - not because my hearing was getting better, but because hearing aids were getting better. And now of course, we have bluetooth which is why I’m able to have a conversation with you today like this. It meant that I was very reliant on lip reading for example. So, lip reading is a skill most deaf children acquire and I’ve been lip reading my whole life and I’ve also increasingly relied on subtitles and captions, whether it's the theatre or whether it's the TV. Losing my sight stopped my accessing lip reading and people’s facial expressions, but also access to subtitles and suchlike. So for example, going to airports or railway stations - I can’t hear tannoy announcements, but I’ve always been able to read the departure boards. Losing my sight, I can now no longer hear tannoy announcements or read departure boards, so you can see, the solutions for one or the other, don’t help or support people who have dual sensory loss.

White

It’s the complexity which probably makes it difficult to understand. People find it hard to concentrate on two things at once.

Nolan

I think so and I think most discrimination is just ignorance and unintended. But for example, when I’m walking down the high street, like you, I use a long came and I don’t hear shouts or offers of help the way you might do. Somebody whose offering help sees me ignoring them and thinks I’m not interested, but obviously if they’re not looking at me or I’m not hearing their speech clearly over the hubbub of traffic or crowd noise or whatever it is, then I’m not aware that there’s an offer of help out there. It’s an exponentially more difficult condition to contend with, Peter.

White

Well, I think that’s explained some of the complexity very well. Let me bring in Dr Peter Simcock. You’re leading the work at the Centre of Education and Research at Birmingham City University. What are the priorities as far as you’re concerned? What is it we don’t know about deafblindness?

Simcock

Research really in the field has been described as in its infancy and there is a general lack of awareness about deafblindness, about this effect of deafblindness that Robert’s really helpfully pointed out. A colourful way of understanding deafblindness I think for listeners is that if blindness is yellow and deafness is blue, if you put them together, you don’t get yellow-blue, you get green - a third entity. And so I think it's really important that we understand deafblindness as a unique condition and therefore, it needs a unique and specialist response. I think there are various reasons for the limited research: we have a lack of awareness of deafblindness, absence of a cohesive research community, limited people working in the field, difficulty securing funding, methodological difficulties - there’s quite a long list. One of our key main aims if the centre has to be to respond to the urgent need for further research into the impact of deafblindness.

White

Am I right in saying that perhaps when people hear the term “deafblindness”, they think of profound deafness and total blindness. That’s pretty rare, isn't it?

Simcock

It is a common misperception that Deafblind means totally deaf or profoundly deaf and totally blind. And some people are profoundly deaf and totally blind. The majority of Deafblind people have some residual sight and/or hearing, but it is the combined effect that causes difficulties.

White

I suppose the other thing is just simply, when things occurred, because that will alter - partly in the way that Robert was explaining - how things develop and does this also have an effect on provision?

Simcock

It certainly does have effect on provision - it’s another reason why the research is so limited. Combined with low incidence, you’ve also got significant heterogeneity. So the needs of people who are born Deafblind are very different from those who acquire it later in life or much later in life. The order of onset - the hearing impairment or deafness, does that occur before the vision? Do they occur at the same time? And then of course Deafblind people, like the rest of us, differ in terms of other features of their lives. So you’ve got this hugely diverse group and such to the point that when we’re talking about Deafblind people, we often have to think, who do we actually mean? Which subgroup within that population are we actually talking about? So this is very specialist work that we’re involved in.

White

And I imagine this also has an effect of confusing the issue when you’re trying to get money for research and funding?

Simcock

Absolutely and there certainly have been calls amongst the research community that whenever studies are proposed, whenever studies are being done within this field, researchers, practitioners, other people involved are very clear as to who they are talking about when they talk about Deafblind people - are they talking about working age adults who are culturally deaf that have acquired a sight loss? Are they talking about people, sixty-five plus, who have lived their entire lives as sighted, hearing people, but have now got age-related conditions or are we talking about people that were born Deafblind and didn’t have access to language for example, because these people have very different experiences and of course, very different needs. 

White

You’re not concentrating on medical treatments I think; more social effects. Why is that?

Simcock

Well, there is already a body of clinical work into deafblindness, including that on different conditions, so geneticists, ophthalmologists, audiologists working on conditions such as Usher’s Syndrome. There are researchers that are following people with Congenital Rubella Syndrome and how that condition has affected them. And so, there already exists a body of medical research; I'm not suggesting there doesn't need to be more. But we’re focusing on the psychosocial impact of deafblindness, because what research there has been has tended to be medical in its focus and yet, it’s reported that the psychosocial impact of deafblindness is often more significant than any ophthalmological matters or audiological matters. We do hope that as our centre builds, we will liaise with clinical researchers and collaborate on future studies. But it’s important that we focus on psychosocial impact because of course good healthcare - any kind of good care - isn't just about medical intervention, but also emotional and social outcomes.

White

Georgina Smerald, you’re Policy Research Manager for Sense, which concentrates on people with complex disabilities. What is your reaction to the work of this Deafblind centre?

Smerald

Well, we’re just really pleased to see Deafblind UK and Birmingham City University launch this initiative, because there’s just such a chronic lack of research into deafblindness and the experiences of people who are Deafblind and some of the challenges they face by having multisensory impairment. We know that there’s nearly half a million people living with deafblindness on national data and we know that number’s possibly going to increase over time. Yet, we know that there’s a huge gap in public awareness and understanding of deafblindness, as well as a lack of innovation and interest from government to invest in more research and services to tackle some of these challenges. And we just think it's really important to do more research to better understand experiences, but also thinking about what kind of ways we can better support and how we can change policy and practise.

White

Anything in particular that it’ll do which hasn’t been done before?

Smerald

There is just a real lack for instance on data on the number of disabled people, but also on just deafblindness generally. Deafblindness is a spectrum and a lot of people have quite unique needs that are very individual, so there’s just a huge number of gaps. We’re just really supportive and welcoming of it and we are very interested to see what findings come up, because we are very keen to implement these into our own services.

White

Peter Simcock, just finally - you’ve mentioned a lot of things that need doing. Have you got a priority say, in the first year, that you’d really like to have achieved?

Simcock

I think even the existence of the centre in itself, Peter is contributing to what I think is perhaps our first stage. Because there's such a lack of data on deafblindness, perhaps our first priority needs to be simply raising awareness and increasing recognition of deafblindness as a third category of sensory impairment. It is not simply the addition of blindness and deafness - it is a third category. And this isn't recognised in all UK jurisdictions for example. It is recognised in England, but it isn’t recognised in all UK jurisdictions. We know from the data available that only about 37% of countries globally actually recognise deafblindness as a third entity. So I think the recognition of deafblindness as a unique condition that requires specialist intervention and specialist support - not from our colleagues in single sensory impaired services, but those specifically trained to work with Deafblind people has to be a priority. And if course, to support our practitioner's to do that work, we need the evidence from the research that we're going to be leading on. Helen Keller described life as “either a daring adventure or nothing at all” and my dream for this centre is that we will support Deafblind people to enjoy the daring adventure.

White

Well, we’ll try and come along! Dr Peter Simcock, Georgina Smerald, Robert Nolan - thank you all very much indeed.

All

Thank you very much Peter! It’s been a pleasure!

White

Well, whatever's on your mind, you can email intouch@bbc.co.uk, leave voice messages on 0161 836 1338 or go to our website bbc.co.UK/in touch from where you can also download today's and previous editions of the programme.

From me, Peter White and producer, Fern Lulham, goodbye.