Conversations: Connecting and Learning With Persons Who Are Deafblind

Chapters:

1. Introduction
2. The Social Challenge Presented by Limited Vision & Hearing
3. The Importance of Establishing Relationship As the Basis of Learning
4. Conversation As the Basis for Relationship and Language
5. The Elements of a Good Conversation: Respect and Equality
6. The Elements Of a Good Conversation: Mutual Topics or Joint Attention
7. The Elements of a Good Conversation: Turn-Taking
8. The Elements Of a Good Conversation: The Mutual Feeling of Being Heard by One's Partner
9. The Elements Of a Good Conversation: Openness to Surprise and Mutual Learning
10. Conversations in Educational Programs
11. Further Resources and Encouragement

CHAPTER 1: Introduction

MILES: My name is Barbara Miles, and about 35 years ago, I met someone who was deafblind and was immediately enthralled and delighted, and since then, I've known maybe hundreds of people with vision and hearing impairments or challenges. And I would just like to share a little bit of what I've learned and what the gift of that has been for me.

One of the wonderful things about fostering natural conversational interactions with children who are deafblind is that it rubs off on people who might be watching, say, in a classroom.

And if the interactions are natural and enjoyable, what may have been seen as like, oh, a difference — a child is like, blind or looks different or is in a wheelchair — may become an object of joy and interest if the modeling that the the children around see is one that shows that.

That, "Oh, it's really nice to interact with this child."

I also really feel like the matter-of-factness helps a lot — the naturalness and the matter-of-factness. This child experiences the world differently, and isn't it interesting, and how can we find out something about their experience?

CHAPTER 2: The Social Challenge Presented by Limited Vision & Hearing

MILES: I think that those of us who can see and hear take for granted the role of vision and hearing in connecting us with other people. I mean, I can be looking at you or someone nearby or far away, and we can make eye contact, and that can immediately give me a sense of connection and belonging. And for a child who can't do that, who can't look with their eyes and see and feel that sense of connection, sometimes that can be a hard thing to establish — but it's not impossible. ( laughing )

It's absolutely possible if we realize that we can make that connection in other ways, and often, it's through touch.

NARRATOR: A video clip shows a blond haired boy in a blue sweatshirt sitting at a water table. The boy, who is blind, uses his hands to explore the table top.

Barbara Miles sits next to the corner of the table and extends her arm for the boy to discover. When he becomes aware of her presence, she moves closer, allowing him to touch her face.

MILES: There was a woman named Selma Fraiberg who did some studies a while ago, and she looked at children who were born blind who couldn't pick up on their mother's smiles, for example. And typically, a mother and child exchange a lot of smiles in the early days, and fathers and children, as well.

NARRATOR: In a photograph, a mother sits on a couch and holds her infant in front of her. The baby gazes at his mother's face, and she smiles broadly back at him.

MILES: What she noticed was that when the blind child didn't have the ability to see the mother's smile, that back and forth reciprocity, that turn-taking, got interrupted. But she also noticed that the blind babies tended to smile in other ways then using just their face. Because what had happened was the mothers had gotten depressed when their babies weren't smiling back because there wasn't that reciprocity, but Selma Fraiberg noticed that... that the babies were smiling with their bodies — with their hands, with... they were smiling in different ways, not necessarily with their faces.

And when she pointed that out to the mothers and to the partners of those children and showed them to look for the babies' happiness in different places — like in their hands; often, the babies would smile with their hands — then the reciprocity was established again, and they could have wonderful little turn-taking interactions, and the mother didn't get sad so much about having a child that couldn't engage in that.

NARRATOR: A boy, who is blind, sits on the lap of a woman who with short, dark hair, and they rock from side to side. The boy faces away from the woman. She is sharing his movements by gently following his hands as he touches his head and mouth.

CHAPTER 3: The Importance of Establishing Relationship As the Basis of Learning

MILES: If a child has a trusting relationship, they feel safe, they feel supported, they feel secure, and they have like, a home base from which to explore the world. And they have models — they have models of how things happen in the world, and that's how young children learn naturally — you know, that they see someone doing something and they want to do it themselves.

So just thinking in a parallel way about children without vision or with little vision and hearing, they need models and they need people that they feel trust in that they can explore the world together with.

CHAPTER 4: Conversation As the Basis for Relationship and Language

MILES: We usually use words and language to communicate with each other, and we happen to share a language with most of the people that we interact with on a daily basis. We don't necessarily share a language with someone who's deafblind. At least not in the beginning, we don't think we do. ( laughing ) And sometimes that inhibits us from interacting because we don't think we share a language, but we need to find a shared language with each person.

And for many of the people who are deafblind, especially young children, that initial language consists of movement, of touch, of rhythm, of ways of discovering things with their bodies. And we can learn to share that language with a young child who is beginning to know the world in that way.

CHAPTER 5: The Elements Of a Good Conversation: Respect and Equality

MILES: I think that having a good conversation with a child who is deafblind or who has vision and hearing challenges is a natural thing in many ways, and it requires practice and it requires good intention. But if we just think about the elements of a good conversation, the things that we experience every day with our friends, we can just think about translating those into our interactions with the children or with our partners who are deafblind. Something like beginning a conversation.

We do it often with our eyes. We approach someone and smile and we acknowledge their presence, and then maybe we see them nodding and we know that they're open to a conversation. So a similar thing would apply with a child who may need a different kind of approach but still needs an approach; a way of opening a conversation.

Just a gentle touch, perhaps, but even before that, sitting beside the child in a way that lets them know that you're open to interacting, waiting to see if they will reach out to you, and then maybe touching gently — that kind of thing.

If you only think their experience — what is it like not to see you — then you can think, "How can I do this, the same thing I do with my friends, how can I do this with the child?"

NARRATOR: In a video clip, a young woman who is deafblind is walking in a hallway with two sighted companions. As they come around a corner, they encounter Barbara Miles.

Barbara stands close enough to be touched and acknowledged by the woman who is deafblind, after which they begin a conversation using tactile sign language.

CHAPTER 6: The Elements Of a Good Conversation: Mutual Topics or Joint Attention

MILES: When I have conversations with friends, I often find mutual topics pretty easily because we use language, we use... we use our vision, even, to show a friend what we're interested in. Even unconsciously, we'll be looking at something and our friend will say, "Oh, look at that," you know, and then we'll start talking about it. But with a child who's deafblind, it might be a little more challenging to find a mutual topic of a conversation. And that's one of the things that I enjoy very often, is discovering together those topics.

Some of the topics that I find very common with children who are deafblind are things like movement and rhythm in early stages, so I will often notice a child moving and gently join that movement, or I will notice them making a rhythm of some kind and I can maybe tap that rhythm gently on their body to let them know that I share that topic.

NARRATOR: We see a boy who is blind with curly blonde hair sitting in a wheelchair. His head rests against one of the chair's foam covered handles. As Barbara Miles taps her hand rhythmically on the outside of the handle, the boy responds, tapping with his hand, as well.

MILES: Families, for example, will become aware over time of things that their children are interested in, and whether it's objects, movements, sounds — sound can be a very nice topic. All children have their interests, however small, however different than what we consider our interests, but they are things that we can join and people can share their knowing of children with each other.

You know, "I notice that he really likes yellow toys," or, "I notice that he really likes soft things." And once you notice that you can join, and that can become a way to establish a conversation.

NARRATOR: An Indian woman in a purple sari sits on a classroom floor. Across from her sits a young boy with thick glasses and visible hearing aids. The woman's hand is extended, her fingers upraised, and they both watch intently as the boy removes and then replaces a ring from her finger several times.

CHAPTER 7: The Elements of a Good Conversation: Turn-Taking

MILES: One of the basics of conversation is turn-taking, is reciprocity, is this back and forth that we experience when we're really in good communication with someone. That can't be necessarily taken for granted with a child who's deafblind. But it's also one of the most fun ways to establish relationship, is just to begin a turn-taking interaction. And the way I do that is to notice something that the child is doing, and I imitate it. Very often, people think they want the child to imitate them right away, but I can often establish a really nice turn-taking interaction by... by imitating something that the child is doing and then stopping and waiting for them to take a turn. Sometimes it happens... often it happens that in our desire to help a child who seems kind of helpless, we take more turns. ( laughing )

We take a lot of turns without waiting for the child, and waiting is an amazing, amazingly powerful thing. If we're thinking turn-taking and if we're thinking giving the child a lot of time to take their turn, and we're looking at anything for the next turn. We don't necessarily know what it's going to be.

We wait for it, and then when we see it, we affirm in some way that we've seen it. Visually, we affirm by nodding or smiling, and a child who can't see well won't pick that up, so we need to find other ways of affirming that we've heard them, that we've seen them, that we've acknowledge their turn. And touch often helps with that.

NARRATOR: A young girl who is blind sits in a kitchen at a wheelchair table. One hand grasps a large metal bowl, and the other rests on a large bowl of bread dough which her companion holds. As we watch, her companion positions the dough under the girl's nose and waits patiently for the girl to smell it.

Eventually, a smile spreads slowly on the girl's face. Her companion then moves the dough with the girl's hand still on top under her own nose, sharing the experience with her friend.

WOMAN: It smells so good! I'm smelling it, too. ( laughing )

CHAPTER 8: The Elements Of a Good Conversation: The Mutual Feeling of Being Heard by One's Partner

MILES: In our daily conversations, the ones that end up being satisfying for most people are the ones where they feel that they have been heard and that they have also heard the other person. There's this mutual feedback, as it were, that allows... allows us to know that we're actually in connection. And that feeling of being heard is... is a very satisfying and important one, especially for a child who may not have much of a voice; who may not have conventional ways of expressing themselves. So I often, with a child, will... will seek any way possible to let them know that I've heard them in whatever form they're expressing themselves. And that will often involve imitation, it will often involve touching, it may involve imitating a sound that they've made. If a child goes, "Eh," I will instinctively often repeat the sound. So I may not know what it means, but imitating it gives them that feeling of, "Oh, somebody heard me," and very often, I'll see a reaction.

NARRATOR: By the window of a classroom, a teacher and a boy who is blind sit and bounce on a large, yellow exercise ball. The teacher pauses the bouncing, and after a moment, the boy stands up and begins flapping his arm and shaking his body. The teacher responds by shaking her hand quickly and the boy springs up and imitates the motion with his hand and arm.

MILES: Children have often idiosyncratic movements, movements that might start out to look like just a kind of self-regulation — maybe flapping their hand — but if you join that, that can become a conversation and can maybe lead into different kinds of movements. So getting to know a particular child and honoring those as possible topics of conversation can be a great delight and learning for the child, because then they realize, "Oh, I'm not alone here. Someone sees me," or, "someone is joining me."

So giving someone that feeling is really vital for a good interaction, and then waiting and pausing and seeing whether they've heard me. And they might indicate that in their own way, which may be just a little reaching out, just a little turning toward me. So I learn to look for those small ways that they have heard me — but I have to wait to do that.

CHAPTER 9: The Elements Of a Good Conversation: Openness to Surprise and Mutual Learning

MILES: I think when I started out teaching, I thought that my job was to put information into the child and to really get them to know what I knew. And when I discovered conversation as a way of teaching, I realized that I was learning often as much as... as I hoped I was imparting to them.

Some examples — even a simple thing like eating can become a conversation. And if I sit beside the child and have my own food and eat and invite them to have access to that in whatever way they need — I mean, if they're visually impaired, I can be close enough, I can take my turns, and they can see what I'm eating and they can see my preferences and the way that I do it. And if they're blind, I'll have to show them in a different way. I'll have to invite them to touch me, actually.

Something like an art project, for example, if... rather than thinking, "Oh, I'm going to get the child to do this art activity," if I think of it as a conversation and I also do it and other children are doing it too, I can then take a turn. I can do what I think the child might want to do and let them have access to that and we can be doing it together.

NARRATOR: Back in the kitchen with the young girl who is blind, we see her sitting at her wheelchair table. One of her caretakers holds a carrot over the table.

The girl's hand rests on top of the woman's other hand, which grasps a vegetable peeler. Together, they peel the carrot — the girl's head turning to acknowledge the woman's presence.

MILES: We can do it with the child, not to them or for them, but really along with them in this conversational way. And you can think of pretty much any activity in the classroom or in the home and think that it could be a conversation — a turn-taking thing. And in that way, give the child both access and also the social practice of being engaged with others.

CHAPTER 10: Conversations in Educational Programs

MILES: I realize that having conversations with children has helped me think about their educational programs, and when I get to know a particular child better and better by having conversations — genuine interactions — I start to understand how they experience the world better and then can adjust an educational program to meet those needs.

I may need to make visual modifications because I've understood the child's vision better by having good conversations — noticing what she can see or not. I may become aware of the stress that comes to her when things happen too quickly, so I may try to find ways of letting her know what's going to happen next and doing that in a very respectful, conversational way. Maybe showing her something that is going to be happening.

I can show her an object that's going to let her know, and we can play with the object a little together in a nice way before we actually start to do the activity. And so that has really informed my thinking about educational programs for children.

CHAPTER 11: Further Resources and Encouragement

MILES: If you are getting to know for the first time an individual that is deafblind or vision and hearing impaired, you're not alone. There are many supports. There are many supports, and in this age of the Internet, there are very many supports. This Web site is one of them, and Perkins has some wonderful publications, among them a book that I was honored to help edit and write called "Remarkable Conversations."

I did that with Marianne Riggio, and there is a lot in there about conversations and about beginnings, and there are a lot of pictures in there of interactions that may offer encouragement, so I would recommend that and also the Web site of dblink.org, which has resources and can connect you with resources on this topic and pretty much any other topic that you would like in terms of helping you navigate this interesting, sometimes challenging, often delightful world of communication with children who are deafblind.