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Voiceover 1: You're listening to IOE Insights, the UCL Institute of Education podcast at University College London.
Leda Kamenopoulou: Welcome to the first episode of Inclusive Voices, a podcast series on the IOE Insights podcast created through the project Collaborative Knowledge Exchange in Sensory Needs Education, funded by UK Research and Innovations Higher Education Innovation Fund. I am your host, Dr Leda Kamenopoulou, Associate Professor and expert on deafblindness and sensory accessibility, and Programme Lead for UCL's MA in Special and Inclusive Education. Through this series, we aim to create a truly collaborative space where research, professional practice and lived experience share insights, challenge assumptions and co-construct knowledge that can really support inclusive educational practice. In today's episode, we focus on myths and facts about deafblindness, also known as multisensory impairment or MSI, a topic that is less known and often misunderstood.
I am delighted to be joined by two leading experts whose work spans research, teacher education, habilitation and practice, and who bring deep understanding of both theory and everyday realities in educational settings. Dr David Turton, MSI Teacher and Habilitation Specialist, and Programme Lead for UCL's Graduate Diploma in Habilitation and Disabilities of Sight. And Caireen Sutherland, MSI and vision impairment specialist, and Programme Lead for the mandatory qualification in MSI/Deafblindness from the Seashell Trust. Welcome both.
Lovely to have you.
Caireen Sutherland: Thank you, Leda. Lovely to be here.
David Turton: Thanks Leda. It's good to be here, too.
Leda Kamenopoulou: Okay. Let's start with probably the most widespread myth. In my experience, my years of researching this topic, when most people hear the word 'deafblind', they imagine someone who can't see or hear anything at all. So, they often think immediately of the Helen Keller stereotype. David, would you mind telling us how accurate that picture is?
David Turton: Yeah, it's an image I think a lot of people have in their minds. In fact, the majority of deafblind people do have some useful vision and/or hearing. But I think this is also a question of definitions. So, while there's various international definitions and some slight differences with the term deafblindness, it's commonly considered to denote any level of combined deafness and vision impairment. So, I think it would be easy to underestimate the diversity and complexity of both of those, of both deafness and vision impairment as individual categories and then in combination that just multiplies the diversity, it makes it even more broad range of ways in which that can present.
Yeah, so total deaf blindness in the way that people think of with Helen Keller, total deafblindness from birth, it does exist. We do see young people who have that, but it is very rare.
Leda Kamenopoulou: Thank you, and Caireen?
Caireen Sutherland: Yeah, like David says, total deaf blindness is very rare. I think of deafblindness as such an individual disability and adding to that individuality and diversity is also the functional side of vision and hearing which can fluctuate, daily even, due to a range of conditions such as health or fatigue or even stress. So, we've got an underlying condition which is very diverse with an additional variable overlay. So deafblindness is incredibly unique to every individual.
Leda Kamenopoulou: Thank you so much. So, basically, deafblindness is not an either/or condition. It's variable, it's dynamic. It may change over time. Right?
Caireen Sutherland: Absolutely.
Leda Kamenopoulou: Thank you both. Another common myth I see is that people think that all deafblind people were born deafblind. And you've already touched upon this, David and Caireen. So, in other words, they think that they were deafblind from birth. David, can you say a little bit more about this?
David Turton: Yeah, so that simply isn't true. So, conditions that lead to deafblindness can be congenital, presenting from birth or during childhood, or they can be acquired later in life. So, some people are born with a certain level of deafness and certain level of vision impairment, some are born with one and acquire the other, or develop the other, later on at some point either through their childhood or later into early adulthood for a whole variety of reasons. While other people might acquire both the hearing and the vision impairment side of it quite late in life, perhaps as part of the aging process or due to some specific illness or even an accident.
Leda Kamenopoulou: Exactly, thank you David. And we often talk about four broad types of deafblindness depending on time of onset of each of the impairments. Caireen, could you briefly outline those?
Caireen Sutherland: Yes, absolutely. And before I just outline those I think it's worth mentioning that the terms congenital and acquired are often used widely in research and literature and internationally. When working specifically with children in the UK, we don't always refer to those words day-to-day, but they're a useful way of thinking of how perhaps that deafblindness has developed for that individual. So, we might have congenital vision and hearing impairment or there might be a congenital vision impairment with an acquired hearing impairment, or the other way around, a congenital hearing impairment with acquired vision impairment, or in fact it's possible to have acquired both of those losses in those distance senses. So deafblindness can affect each of the distance senses at different points and in different ways across a person's lifespan. So again, that individuality is really important to understand.
Leda Kamenopoulou: Thank you. Thank you for mentioning that the congenital versus acquired is not always used. And since I have both of you experts here, I'd like to ask you a question. Do you think that perhaps pre-lingual is a better category or description to use when working specifically with children and young people?
David Turton: I think it can be useful to think of it in terms of the broader context certainly of language or communication acquisition more broadly and what that looks like before and during, and perhaps after, if it makes sense to think of it in such terms and for the development or acquisition or for hearing or vision loss. And that will have implications for the kinds of communication and language that are developed, and that might change how that emphasis sits through the course of the development of the condition. So, I think 'pre-lingually', or the term 'pre-lingual' is something that maybe simplifies it a little bit, but the general context of that question I think is really important.
Leda Kamenopoulou: Yes, also because what does pre-lingual mean in the case of deafblindness or MSI? Because a language can be tactile, oral, we'll come to that later. Thank you, David. And Caireen, did you want to come in on that?
Caireen Sutherland: Thank you. I think this question just really highlights the fantastic element of working and being part of deafblindness, in whatever way you might be, that it's so unique and diverse that all of these terms and labels or expressions help us and guide us a bit but no one individual term matches an individual, obviously, and it only gives us a slight insight. But they're useful as a guiding tool I think all of these terms together but perhaps not in isolation.
David Turton: And I might just add as well that perhaps the context of thinking about the pre-lingual concept and the onset of the sensory loss, it relates to that issue in other related fields. So in my own area of habilitation we make a strong distinction between habilitation, learning skills with sensory impairment for the first time, and rehabilitation which would be relearning skills, and I think there's some overlap in the issues involved there with language development and whether you're learning something for the first time and developing a language, whatever form that takes, or having had language in one form you're having to kind of adapt that to another and it just I think it highlights all the different trajectories and factors that are involved for these young people and the adults in this population.
Leda Kamenopoulou: Thank you both. So, to address myth number two, what most people may often think that deafblindness is always present from birth or that a deafblind person was born that way, we conclude that deafblindness can affect both senses simultaneously, or separately across the lifespan. And I'd like to point that out. I often like to point that out to my students or the different audiences where I present about my work on deafblindness. It's worth noting a fascinating, I think, and often surprising fact, that worldwide, the most common cause of deafblindness is aging, actually.
So, vision and hearing deteriorate over time, and many older adults experience a form of deafblindness, even if they may never identify with that label. So that means it's a matter that potentially can affect all of us. That's why I like to say, pay attention! It might happen to anyone.
Okay. So, let's tackle another myth that all deafblind people have the same needs. Caireen, what's the reality?
Caireen Sutherland: I think some of our conversation already is highlighting that deafblindness covers a huge range of needs and across the population and that can be dependent on a number of factors as to how the deafblindness has developed for that young person. But there are many, many other factors at play. So, the time and quality of the original diagnosis and the subsequent interventions and the involvement of specialists, the cause and time of that onset, and also with the population that we work with particularly in children and young people, there's very often presence of additional disabilities and other needs. So, many deafblind young people have additional disabilities whether they be cognitive or physical or medical needs which further adds to the complexity of deafblindness and their experience within that.
Leda Kamenopoulou: Thank you. So, basically you're telling me where we are concluding here, that knowing, having the label, knowing that the child or learner is deafblind does not give us an accurate picture of their needs, because of this uniqueness of deafblindness.
Caireen Sutherland: Absolutely.
Leda Kamenopoulou: David, would you like to say something here?
David Turton: Yeah, I think I just agree with that and I suppose echo something that Caireen mentioned earlier, that even within the same individual, things can change from moment to moment or across the day. So, a child's ability to perceive or process sensory information in the classroom, it could deteriorate if they're tired or if they're anxious. And in an educational context I think sometimes it can be quite difficult to communicate that to the team around that young person where sometimes non-specialists, quite understandably, just want to know, well, what can this young person see and what can they hear? And the answer, very often, is well it's not quite as simple as that. It depends on lots of factors that are within the person and also lots of factors that are in the environment around the young person, and the time of day, and what they've been doing previously, and so many other things.
Leda Kamenopoulou: Exactly. Thank you. And so, one thing I often say is that deafblind people, what they have in common are their differences. I really like saying that. So, each learner like you and Caireen have just explained, is each learner is unique.
There's no single profile, no standard pathway and no size one-size-fits-all approach. Right? And, I think that idea, that difference is the common ground, is very powerful for inclusive education.
Let's say, shall we talk about another myth? Another myth is that deafblind people only rely on their other senses or that they have more heightened that there are other senses are more heightened and that they don't use vision or hearing to communicate, to move around, to gather information about the environment.
Caireen, how should we think about this?
Caireen Sutherland: I'm so glad this is in here because this is such a common myth and thing that people ask me when I deliver training, when I talk to people interested in deafblindness. I think it's much more accurate to think about our senses working together in a coordinated way when we don't have an impairment of one of our senses. So, all of our senses, all eight of our senses, work really well together to bring us optimum information. And when somebody is deafblind, they need to use all of the information available to them. So, they may have better access to some functional vision, or they may find using touch more accessible and easy at a given time, or they may have poor proprioceptive skills, so not use their body and their awareness in that way.
Again, it's a very individual thing and it's not about one sense taking over or being stronger and replacing other senses, it's about the ability to tune in and integrate the information coming from all those different senses.
David Turton: Yes, so I'd agree with everything that Caireen said there and I think that helps to explain why communication methods among deafblind people are so diverse as well. And depending on the individual, communication might involve some form of manual sign language, or signs supporting speech, perhaps within a particular visual field or tactile or on body elements of that signing. It might involve the use of object cues or pictures or symbols, or methods used for people who might just have one of the single sensory impairments like Braille. Any combination of these and lots of other approaches as well make up the communication of people who are deafblind. And I think it's important to think how none of us use just one form of communication in our lives, but the expressive and receptive strategies, so the ways in which people speak in whatever form and listen, it can be much more diverse I think for this population that we're talking about. And it can reflect the individual's preferences, their sensory profile, as well as the skills of whoever they're talking to and the formality of the situation. So, I think the context and the environment in which that communication occurs also has a really significant effect on what's necessary and perhaps what's possible.
Leda Kamenopoulou: That's so true, David. And it reminds us that knowing someone is deafblind doesn't tell us anything about how well they perceive or how they perceive the world, how they prefer to communicate. So, you cannot look at a deafblind person and know how much or how well they see or hear, how they prefer to, what methods they use to navigate the world or what support they need. So, this is another thing I often say that deafblindness is actually an invisible disability because, you know, we can't assume a person's needs based on a label. It just doesn't work.
And the best approach is always to ask. Okay. And one final myth before we close, that often people think that if you know how to interact with a deaf person or a blind person, you then know how to interact with a deafblind person. David, is that true?
David Turton: Well, I think this builds on a couple of other points that we've been discussing already. So maybe it's useful to think of it this way, that deaf people can use vision to compensate for hearing loss, and blind people can use hearing to compensate for the vision loss. But for deafblind people, even a relatively mild impairment in what might be considered the compensatory sense has a much more significant effect for that reason. So, we might say sometimes that deafblindness isn't additive and it's not just the deafness plus the blindness, it's a qualitatively different thing that we're dealing with and so we need to think of it as a distinct disability, or need, in its own right. And we often talk about deafblindness presenting challenges for three things, so for communication, for mobility and orientation, for getting around, which is my own area of interest, and for access to various forms of information.
So, again, in educational context all of these factors have direct relevance for how we want to plan and structure and support the learning for that young person.
Leda Kamenopoulou: Thank you. Caireen?
Caireen Sutherland: Yeah, I completely agree with David's points. And I think what builds on this even further is that we then also need to look at the person in the context of where they are and how the environment that they're trying to communicate or move in, or exist or learn in, because the detail around the environment, so the lighting, the noise, the contrast, the position of resources and information, can all dramatically affect the success or otherwise of somebody who is deafblind's ability to communicate, to move around and access information. So, not only are we looking at the diversity of deafblindness as a condition but also when we couple that with the many, many fluctuating changing factors of an environment, we've got many things to address when we're looking at how best to interact and work with, and be alongside, deafblind people.
Leda Kamenopoulou: Thank you, Caireen. I think it's interesting how often, we mentioned the word environment in our discussion today. So, deafblindness and inclusion in deafblindness, is about focusing on the interaction between the person and the world around them, the environment. So, when physical, social or digital environments are not designed with accessibility in mind, they don't just make life more difficult. They actively exclude deafblind people, limiting access to communication, learning, participation and other things like relationships.
So here, we all agree that each person with MSI has a unique mix of abilities and challenges, their own preferences, likes, dislikes. So, it is essential knowing that profile is essential for meaningful inclusion, and inclusion must focus on both the person and the environment. Yes, not just deafblindness, but the interaction between deafblindness/MSI and the context.
David Turton: And could I just add to that, Leda, as well? I think if we're thinking about somebody's needs, for me that's very much a multi-directional process as well, rather than just thinking about the individual in isolation and what that individual needs, we need to think about the situation and other people involved in that and what are everybody's needs and what are the changes to the environment that's necessary, both the human and the built environment that we're thinking about, in order to facilitate that inclusion holistically and in a way that considers what everybody's bringing to that situation.
Leda Kamenopoulou: So, for example, that might involve training people in communication strategies or methods depending on what is needed?
David Turton: Absolutely. And thinking about the skills that everybody has in that situation and how well they support a kind of interdependent and multi-directional support for one another rather than thinking just of the person who's deafblind being brought up to the level that other people are at already.
Leda Kamenopoulou: Thank you. Thank you, David. That's amazing. And Caireen, is there anything else you'd like to add?
Caireen Sutherland: I don't think so. Thank you.
Leda Kamenopoulou: Thank you. As we come to the end of this episode, one of the strongest messages to emerge is the importance of collaboration, context and an open mind. So deafblindness and sensory needs more broadly cannot be understood through a simplified or fixed label and assumptions. Instead, as we've discussed today in length, inclusion depends on recognising individual needs, right? Attending closely to the learning environment and remaining open to what children, families and practitioners tell us about their lived experiences.
We hope this episode contributes to ongoing dialogues about inclusion in education and encourages listeners to question assumptions, reflect on their own context and be able to engage more confidently, with complexity. Thank you to our guests for sharing their expertise. Thank you, David. Thank you, Caireen.
David Turton: Thanks, Leda. It's been great.
Caireen Sutherland: I've really enjoyed it. Thank you very much.
Leda Kamenopoulou: Thank you both. We really appreciate your time and expert knowledge. Thank you to our listeners for being part of this collaborative journey. This podcast series is funded by UK Research and Innovations Higher Education Innovation Fund, and we look forward to continuing to share insights that strengthen inclusive practice for children and young people with sensory impairments and complex needs. I am Leda.
See you next time.
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