Paul Hart Interview [music] >> Paul Hart: The title of the video really came-- and again, it was inspired by a phrase that Barbara Miles has probably used many times because it's really central to her thinking when she was part of the project team putting the film together. Saw her once pick up a glass in a conference and just say, "Imagine in that glass there was an entire landscape for a person who was congenitally Deafblind." And it was-- it was really true-- and it helped-- and the whole film is about helping people who rely on hearing and vision to understand that it's not necessarily a dark, lonely world if you're born Deafblind, but it's a world which has got fantastic landscapes, though just perceived in a completely different way. And that's really-- that's really the overall message. [music] >> I think it's about acknowledging anything that comes from a person as potentially communicative. And that doesn't mean that everything will become communicative or some things-- could have just been the way somebody was moving. But I think our starting point should be to presume that somebody is attempting to make a connection with us, to tell us something, to reach out to us. And we could certainly respond in that way. And I think some examples, just even before language emerges, that there's a piece of footage with myself working with a young woman who is Deafblind. And we're doing some interactions based around movements that are really coming from our body. So, there's wiggling of our toes and sometimes a move of the head. And so we've got a really nice dialog going around when she wiggles her toes and I wiggle my fingers on top of the toes and then she moves to the other foot and she wiggles those. And I think she's kind of keeping me on my toes. And then at another point, she lifts her shoulder and I touch the shoulder, but she does nothing else with it, but brings me back to the toes. And now when I look at that piece of video footage, I think the shoulder movement was just a readjustment in the chair and that she wasn't saying, "Could you do this game up here?" And our insistence seemed to be to get me back to the feet. But I think it was still my job to spot that and to see that and give it the possibility that it could become something that was going to become part of the game that we were playing. So, yeah, I think it's really trying to acknowledge things and respond. And I think it's kind of like some things become self-fulfilling prophecy. So, if we if we decide that someone isn't communicating with us, then we're not really going to be looking out for communication overtures and kind of invitations to interact if we grant the potential to any communication partner in front of us, someone who is trying to make a connection, then we probably spotted a bit more. And I think there's a-- I think he's a Norwegian philosopher called Rommetveit, and he says that in order to achieve intersubjectivity, you have to presuppose that it can happen. And I think that's the same with communication. If we see the other person as a potential communication partner, then they could become so. In fact, they will become so. And if you don't and you'll not spot a movement that person makes. [music] >> The more I have stayed in this field and learned from people who are congenitally Deafblind, the more that distinction between what symbolic language and what's non-symbolic language or symbolic communication and non-symbolic. It doesn't really make sense to me anymore, particularly if we understand the body as the source of language. And there's been quite a lot written in the last few years about this kind of concept of embodied cognition and the idea that the physical space inhabited by humans and the way we are in the world really influences our language, even spoken language. But I think in working with people with congenital Deafblindness, I think their experience of the world will be here in in their body. And it's really our job to kind of begin to interpret that and to try and work out why is someone doing that particular thing and really to try and understand it from the perspective of that person's perception of the world. And so if your principal contact with the world is through touch, then it's likely to be through touch or through something in your body. But then you want to express something about the world. So, yeah. Symbolic, non-symbolic. I'm struggling these days to see the difference. And I think it probably has a practice implication. If we as teachers spend our time trying to help pupils to become symbolic communication users and language users we're more likely to see that as our language or our communication as the thing we are trying to guide someone towards and we might not spot that language is already there in someone's actions and someone's gestures and someone's movements. There's a famous video in our field. It's Anna Nafstad working with a young man called Serge. It was on a video that was shown sometime, maybe in the early 1990s at a conference about communication. And Serge and Anna are playing a game which is about clapping and responding to each other's claps. Clapping hands, different partners clapping on to each other. And you can see that Serge is really getting excited and interested in this interaction and this pattern that's happened. And then at one point, he takes hold of Anna's hands and they jump up and down. And it's really, really excited. And you can see he's happy. Now there might be some people that say, "Well, it would be symbolic language if he gave a sign for happy." And it's like, he's already given a sign for happy and it's in all of his movements that he's just done. And of course, that doesn't mean we shouldn't shape and want to introduce cultural language: American sign language, British sign language, tactile forms of these. But we could at least acknowledge that the person has already told us he's happy and it doesn't need another, you know, another way of doing that if it's already been done. [music] >> There's quite a lot, particularly in terms of early development and early language development, so most of us will be familiar with those films where we see very young babies, some even 10-minutes-old, who can interact with the adults around them, sticking out your tongue, wiggling your finger or whatever. And babies can do that right away. And there's a man who works at the University of Edinburgh named Colwyn Trevarthen, and he's written an awful lot about this, these early developments. And he's now termed some of this "communicative musicality." And it's that real sense that some of those early patterns have very musical qualities, particularly rhythmic qualities. And if you listen to, I don't know, maybe some-- there's a piece of music that always comes to mind, which is the Count Basie Orchestra with Ella Fitzgerald at the 1972 Santa Monica Jazz Festival. And Ella Fitzgerald begins to improvise. And she improvises with the instrumentalists. So, she goes to the trombone player and encourages him to do even more outlandish improvisations and she's doing her improvisations. And then she moves to Stan Getz on the saxophone and again encourages and then I think Harry Edison and the trumpet and-- you can tell I'm a musician, I like all this kind of stuff-- but it's really, really complicated the way they're doing it. It's very rhythmic. It's very melodic. It's very musical. But it seems that they're absolutely in tune with one another. And as the famous quote in our line of work from Barbara Miles and Marianne Riggio that "communication is connection." And that's what Ella Fitzgerald is doing with those people. And if we see a teacher interacting with a Deafblind child just around the feet or around movements of the hand, and there's really nice interaction and are completely in tune with one another, why is that not communication and why is that not an incredibly detailed conversation, particularly if it leads to humor and laughter and that sort of sharing of emotion? That seems to me no more or less loud than chatting about last night's soccer result. [music] >> There is, from a neurological perspective, understanding touch, there's plenty of research been done now that can demonstrate that humans can really understand emotions just through touch. And we can do-- we can change behaviors just even with a fleeting amount of touch, or somehow or other, a tactile sense is able to pass complex information between people. So, there've been experiments where maybe a librarian is asked-- or people who use a library are asked-- to evaluate the librarian and the librarian is part of the experiment. And he or she is told when you hand the person the book, for some of them I want you to hand it in a way that there is no physical contact between you and the person taking the book. You just hand them the book and say "cheerio." For another group of people, I want you to just hand the book over in such a way that your hands kind of very gently just touch a one-- or a finger touches a finger as you hand the book over. You don't draw attention to it. You just do that. And then the people are asked to evaluate the service they had from the librarian. And consistently the people who had a physical contact, even though it was just a second long, they will give the librarian a much better evaluation. And that's just in a few seconds of contact. And then we can imagine that the people that we are supporting, people who've been Deafblind since they were born, their sense of touch will be-- it's-- in terms of the neurology, there'll be much more processing going on. The receptors here won't feel anything different. The brain will just make much, much more sense of it. And if any of us can read emotions and change a behavior by just a quick touch then the people we support on a day-to-day basis, I think they will read that when we come into the office in the morning or into the classroom that you had a bad day on the motorway coming in here or that you're an hour late and you're stressed or you had an argument with your partner just before leaving the house. And that will still probably be here in our hands and in our bodies. And I think some of the people we support will be really expert at reading some of that behavior. And so that, yeah, that might just help us to think how can we prepare for that contact and how can we give a message to the person that we're here, we're open for communication, we're ready to interact with you. [music] >> There's probably nowhere in the world yet where a natural, tactile language has spontaneously developed. Just-- and where they have developed it will be because teachers and people with Deafblindness working together have developed languages. And I think that it leaves-- if I'm a teacher and I've got a person with Deafblindness as my pupil, then of course I'm more knowledgeable about language perhaps than this four-year-old child in front of me. This four-year-old child in front of me will be much more knowledgeable about living in a world where touch is your primary source of contact with the world. And so part of my job as a teacher might be to try and impart some of my skill, knowledge, and experience to the child. But I have to also become the learner and let the child, even if the child is four, the chance to teach me something. And we have to learn from each other if we really want to begin to work out how our natural, tactile language can develop. There's a man called Norman Brown, who is the father of a young man who is Deafblind, and he was a real scholar of the Russian psychologist Vygotsky. And Vygotsky speaks about this zone of proximal development, which is a kind of gap that exists between what a child can achieve on their own and what they could achieve with the expert guidance of somebody else. And that could be learning the piano or to talk or walk or anything. So, a zone of proximal development is the sort of gap that you can get over with somebody else's support. Norman Brown writes about in our field we should think of a double-sided zone of proximal development where, of course, there are parts for me to help the child to bridge this gap. But there are also parts where the child can help me to bridge the gap that I have in my knowledge. And as teachers or as professionals, as parents, as communication partners, working alongside people, I think we have to leave at the door our egos, and that sense that we know all the answers and we have all the answers. Because when it comes to developing a tactile language, then none of us will have that. All of the answer, because it wasn't my first language or a natural language for me. [music] >> I think it goes back to what we were discussing before, which was responding to everything as if it has a communication potential and then if a gesture or a movement that grows out of an activity-- that could be, I don't know, just making a cup of coffee. And there are movements and gestures that you'll have to do to make a cup of coffee. And any of those gestures could then come back from the child as a way of talking about the coffee making. And I suppose it's our job, really, to try and spot where those gestures are and to acknowledge that is a really, really super way of asking for a cup of coffee. But to think of it in a tactile manner and not necessarily in a visual manner. And there's a young woman who I know in Scotland and there were some-- she went to the cafe most Wednesdays and myself and another colleague took her to this cafe. And we had hours and hours of video footage of different trips to the cafe because we were trying to watch language grow from her and how it happened. But it was an observation that one staff member said, "I don't know what she means when she places her hand like this in my hand. So, she'll look for my hand and she puts her hand down with that movement and we don't really know what it means." So, we can then draw back through hours and hours of video, go back weeks and weeks and weeks. And we can begin to understand a bit more about what this gesture means. And when you see maybe months before that, when she's had a cup of tea and it's placed on the table then because she is completely Deafblind, then she will place her hand on the perimeter of the table and she sweeps her hand until she bumps into the cup and then she takes the cup and drinks. So, part of our thinking might be, "Well. I wonder in a tactile capacity if that means something to do with drink." And the reason it was confusing for the staff team is because she had a sign for drink already, which would be a standard tactile version of a British sign language sign for drink. And the staff are saying, "If she has that sign for a drink, then why don't we just use that one? I was sure this means drink." So again, you can watch hours and hours of footage and we begin to see there's a pattern that emerges. If there's no drink there on the table as the first drink she's had in the cafe, she will give us a sign "drink" or a tactile version of that. If she's finished that cup of coffee and she's after another cup of coffee, then that's when this sign was given. So, it's kind of like she had two different ways. There was a sign for asking for coffee, and there was a sign for asking for another coffee. But this one is very tactile because it's exactly the movement she had to do to pick up the coffee. [music] >> I learned a good number of years ago from a colleague from Norway, Gunnar Vege, who I think has been here in Texas. I know he's been in Texas as well. And he really taught me to always prioritize declarative communication. And declarative communication is the kind of communication where someone's making a comment on something, expressing an emotion, talking about yesterday, that something that might happen tomorrow. But it's moving away from the here and now. An imperative communication is this kind of command and instructional information. Do you want a cup of tea? Can I have a cup of tea? I need to go to the toilet, whatever. But if you prioritize declarative communication and we imagine that when someone signs "drink," if we imagine that they are wanting to talk about a drink and talk about the nice time you had yesterday in the cafe, or I just want to chat about different kinds of coffee or whatever. If they really are wanting a coffee right now, then they will make that clear. By saying, "No, I don't want to talk about coffee. I just really want a coffee now." But if we presume that everything is imperative and asking for something to happen right here and now, by the time we've acknowledged that and we've started to make a cup of coffee for the person we've then shut down any possibility of talking about it because we've already interpreted and acted upon the thing. So, Gunnar taught me that if you imagine that she's not wanting a drink, she just wants to talk about a drink, then that leaves all of that declarative world open to you in that narrative world. But if she really wants a cup of coffee, well, she'll have plenty other ways to tell you that I really, really want a coffee. So, I think, yeah, prioritizing- - imagine someone is not asking for it right there and then. It's probably a good way to go. That doesn't mean people don't want things. First thing in the morning if I sign "coffee" then it really is coffee. [laughs] [music] >> Someone who's also been here in Texas and who's taught me an enormous amount, Barbara Miles. And I had Barbara speak once at a conference where she was exploring some video footage she had, and it was video footage of a school in India. And it's a young Deafblind boy is maybe like 10 or 11 years old. And he comes in to the school and his teacher always meets him in the hallway because they've been learning about a greeting ritual. And the teacher then takes him around the classrooms so that he can shake the hands and say good morning to the other teachers. And that's-- that could be good learning. And that's those social skills, interaction, there's a whole lot of things he's learning there. But all the while, when he's shaking the teachers' hands in all these rooms, there's usually something else that's attracting his attention. That watch down there, or that bottle of water, or that pen, or that whatever. And Barbara says to the teacher, "When he comes tomorrow, the very first thing he looks at just have a conversation about that. Just see what happens." And when the boy comes in the next day, the teacher puts out a hand. She's wearing a lovely ring. You've probably seen this video or heard Barbara speak about it. And the teacher says, "Oh, the ring!" And she sits down and the boy sits down and they-- to cut a long story short, they have a long conversation about this ring and it's on the finger and it's off the finger and it's on his finger and it's played with and it's not-- there's no formal language. There's no formal, you know, signs or spoken words being used. But they're learning an enormous amount about each other and sharing emotion. And it becomes very, very interactive and it's maybe, I don't know, 30 minutes or something that he's searched and explored this object. So, it's really going with the kind of thing that sparks someone's attention. And then the conversations we've had even today in some of the classrooms, then the teachers are well able to describe things that really make the pupils tick. The thing that makes, you know, makes it worth jumping out of bed in the morning to live your life. And if we kind of go with those then all sorts of possibilities are there. And you can structure and frame all your other learning and language around the topics that that kind of interest the person. [music] >> I always remember we had a very famous woman from Denmark, Inger Rodbroe, who came to Scotland, and she was presenting to a mixed group of people, some of whom were from schools in England, some from schools in Scotland, and practitioners in the field of Deafblindness in a variety of different roles. And there was a discussion between two groups of teachers about the difference between the curriculum in Scotland and the curriculum in England and how could you make those curriculum work- curricula work- for a child with Deafblindness. And Inger let this conversation go for quite a while. And then she interjected and said, "I'm really confused by all these discussions. We have a curriculum in Denmark as well, we just call it 'The Child.'" And it was really eye-opening and it was really interesting. And that doesn't mean we don't have to follow curricula, but I think taking Inger's ideas along with Barbara's ideas, it's really trying to find the thing that really gets that particular individual thinking and what motivates them, what inspires them. And if we work with that then I think all sorts of things are possible. [music] >> We've been investing quite a bit of time and energy in the last few years in Scotland, thinking about just those questions. And we've been really kind of inspired by some of the thinking, some of the approaches in the UK called person-centered thinking. There will be similar approaches here in America as there will be in other parts of the world. One of the things that's interesting in this person-centered thinking is trying to separate out what's important to the person as opposed to what's important for the person. And so the kind of what's important-for could be getting your medication or your health care needs or being able to do a physical routine or things that will keep you safe and things that will keep you healthy. And even if the person themselves doesn't know those things, it is our duty as hearers, educators around a person to know what's important for a person and provide for those. The more exciting thing is the thing that's important "to" the person, and that tends to be people, places, activities, hobbies, their interests. And when we looked at a lot of our support plans, what you might call the education plan here, it was quite clear that the balance had gone to things that were important for people. And we were certainly keeping people safe and healthy. And we knew our support lines were full of really detailed guidance on how to give someone medication or to be-- assist them in a shower and blah, blah, blah. But not so much that maybe made the person jump off the page. As you know, "I really love this" and "I really love that." And "I really love this person" and "I want to do more of visiting that place or whatever." So, we invested quite a bit of time really trying to work with the staff team and with families and with the people we support to get that important-to information more and more into the plans. And for some people, that's as simple as just asking a question and we can get the answer. And for other people, we may have to adapt our communication approaches and use maybe as a system in the UK called Talking Mats, which is a sort of visual way that people can express things that are important to them. But even if someone has very complex communication support needs, we can watch the reaction to activities. So, if we go swimming and for 10 weeks in a row when we go swimming the person cries and gets distressed, we might be able to conclude that maybe he's telling us he doesn't like swimming. But every time we go to horse-riding and he breaks out in a smile and he's really cheery and happy, so maybe he loves horse-riding. And if you've got enough of those observations, then we can pretty much conclude that "let's do more of that and a bit less of that." And one of my colleagues in Scotland did this really lovely exercise about probably two years ago. And the three people involved were all skilled language users-- two in sign language and one with spoken language. And she ran a day for them, which was called My Perfect Day, and she got them to talk about what their perfect day would be. And in Scotland, there are sort of 15 outcomes that people think "if all of us in Scotland met these outcomes we would be a much happier nation." That could be, you know, "I get to spend time with family and friends. I get my health needs met. I get opportunities to be outdoors, et cetera, et cetera." And she asked these three people to choose what would your six most important outcomes be for you? And so they chose them and worked out how that would look like for them. And then two of those three people went back to the staff teams, I think maybe a week later, and they asked the staff teams to do exactly the same exercises but based on the person they were supporting. So, it was the person themselves saying, "I want you as my staff team to tell me what you think my perfect day would be and tell me of these 15 outcomes which six would have been the most important for me." And the correlation between what the staff picked and the person was incredibly close. And that gave us kind of real confidence that if a staff team or a family around a person know a person and really picked up in the observations, they will kind of know what really makes a person tick. And so that gave us confidence that building up a kind of observational cues for people with more complex communications abilities is likely to be relatively accurate. I mean, it's still better to ask a person directly. But for some people for whom that is less complex, then the views of family, the views of skilled professionals around them gets pretty close to the heart of the person. So, yeah, we've spent a lot of time really trying to get the important-to much, much more into people's daily plans and how they want to live their life as opposed to all these other needs they need might and but not what makes you jump out of bed in the morning. [music] >> Early communication development and music are one and the same thing. So, there are plenty of people who can now describe the early developments for any of us when we were 10 minutes old or a month old or three months old. And you can look at all of those interactions and describe them in musical terms. And it seems then that music would be an ideal way to kinda build some of that early communication. That could be even with someone who's much older, who's maybe had limited exposure to good communication practice, that music and that kind of interaction can often unlock it. So that's one of the reasons why we like it. But I think-- and I'll stick with music for the moment, but again, this is true of all of the arts-- I think a music session allows you to free up the rules that people are playing. And if you choose to see the other person in front of you as a musician and you come to the session just as a musician, then I think all sorts of exciting things can happen. And it goes back to the description before about the kind of double-sided zone of proximal development. If it's just two musicians interacting, then that's- that's a great conversation and that's a great way to be in the world. But the other thing that I think the arts give us-- and we've certainly found this in Scotland-- is that it can give a real equal playing field for access to the world and for people's expression to be really, really accepted. And we've got loads of examples of people in Scotland who've become performers, dancers, taking part in theatrical productions, and we've presented theater shows with people with Deafblindness, autism at the Edinburgh International Arts Festival. We've taken shows on tours in various prestigious theaters around Scotland. And when people are up on a stage they're no different from any other actor or actress, and that's really liberating for them, but it's liberating for the audience as well. Just to be watching a play unfold on the stage and not worry about who is that person. And I really like that. And we've had people, visual artists who've had exhibitions in fairly prestigious galleries in Scotland-- and again, I think it really equalizes it. And one of the things that I thought about-- I've tried to work out what, why might that be the case. What is it that's happening there with the arts as well as unlocking communication and identity and giving people a greater sense of self. But when I visited some people, some families and some Deafblind people in India a couple of years ago, I was struck that some people, even with quite complex needs, were performing a role that was incredibly valued by their family and by the community. So, there was a young man who-- the family business was making gravel, the small stones that you might put on a path or whatever-- but the way the business worked was an enormous rock was delivered and the father broke that down into still fairly large rocks. And then another son broke those rocks down until eventually they became rocks like this size. And the son who was Deafblind then did the final bit, which was breaking it down into tiny bits of gravel. But his role was no more or less important than anyone else. And I was thinking, "Gee, in Scotland would it be possible--" that kind of job couldn't exist in Scotland because we would have a machine to do all that. And I'm thinking, "But he was getting enormous value and he had a real role to play in all of this." And I saw two or three other people who were just involved in the family business just because it was possible to do. And I think one of the things that the arts can give us in Scotland-- and that would be to here in the States as well-- is that it can really give someone a value and a purpose and an opportunity to kind of play an equal role in that employment sector or to make a contribution. Both personally but also at a wider society level. And that changes how people perceive the person. It's an artist. It's a musician. It's a dancer. It's a rock climber. It's a mountaineer. Rather than "that's somebody who is Deafblind." And I think that's-- yeah. The arts can really do that quite comfortably and quite easily.