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Co-Creation of a Language That Does Not Yet Exist or, “Hush Up and Listen”

Exploration of the development of communication with children who are congenitally deafblind through components of a great conversation and sharing experiences. Suggestions for co-creating language with individuals with multi-sensory impairment.

Foundation for Well-Being and Quality of Life

Human interaction begins in infancy. From when a baby and mother share a moment’s gaze – maybe at the buttons on the shirt that mother is wearing – the process of human interaction is being established. Human interaction is the basis for social exchange, the exchange of information, of ideas, of emotions. Human interaction is conversation, both spoken and unspoken. Human interaction is the foundation for well-being, and quality of life. 

For the person who is deafblind, how do we enter into their world of tactile interaction? How do we teach curiosity? What is the recipe for bonding? Why must we recognize the communication being expressed, before formal language is imposed?

A teenage girl examines a stone statue of human figures as an adult looks on.

Components of a Great Conversation

What comes to mind for you when I ask, “What is your idea of a great conversation?” You might answer by saying that you felt heard, that your partner was listening to what you had to say. That the topic was of interest.  You might say that your partner’s listening made you feel affirmed, without judgement and without interruption. 

In this ideal conversation, I imagine there would also be an easy turn-taking; “I talk, you listen – you talk, I listen”. There would be a sharing of information and also a sharing of emotion.

Our conversation would follow an arc that started with a greeting. The arc would rise and fall as our excitement quickens and slows, as our emotions flow and ebb. This arc – rising and falling – might be expressed through our body movements, our facial expressions, and the tone of our voice. All of this would be reflected back at us like a mirror as our partner reacts to what we were communicating. 

Desire to Share

When you think about it, most of our great conversations aren’t started because there’s something that one party wants to simply “tell” the other person. Good conversations aren’t one-sided affairs.  Many times great conversations raise as many questions as they answer. Many times people interact with one another to process something new; something they’re trying to think about, something they would like to share with an active partner. Someone who “speaks the same language” as the saying goes.

Common Language

Most of the time, when we think of a conversation, we think of two people talking, taking turns, and exchanging ideas in a common language. Maybe that language is English or Spanish or Italian. 

Along with this spoken language there is another dialogue that is happening at the same time; a visual dialogue of non-verbal language (gestures, facial expression, and body language). 

Culture also has an influence on this conversation. Culture, which is created from the ideas and concepts we experience from the people and artifacts that are around us, that immediately influence our world perception of which we are a part. Our culture is part of our common language.

If we want to help our children who are deafblind “speak our language”, we first have to learn their language. This does not apply in the same way to children who are born with sight or hearing and then lose these senses later. These individuals, for the most part, will have acquired some basic concepts and aspects of our language (spoken or signed) before they experienced the sensory loss. They will become tactile learners, but their initial experiences are different from a child who has from the beginning, experienced the world from a predominantly tactile perspective.

Symmetry – Serve and Return

When we visualize the ideal conversation, it looks very easy. It has an uninterrupted flow, where both people have equal time to speak as well as listen – symmetry. There is a back and forth exchange of ideas and dialogue – serve and return. Both parties are focused and interested in what the other person is saying. They connect to the topic. There is no misunderstanding. There is a commonly understood language.

Experience of the Child Who Is Deafblind

What happens when there is no basis for a common language? When there is no concept of “I talk, you listen – You talk, I listen”? As seeing-hearing people, we have prior visual and auditory experience with conversations. We are able to visualize what the ideal conversation might look like in our mind. We can imagine what the words might sound like – we can hear the language people are speaking.  Is it English? Is it a foreign language with words we don’t understand but can still recognize as a spoken language because we have the concepts of what spoken language and words are? 

For a person who is deafblind, their experience of the world is likely to be very different from a seeing-hearing person’s. If they are congenitally deafblind, their experience of language might be even further from our seeing-hearing person’s ideas of what language means. If one’s experience of the world is largely from a tactile-bodily perspective –  a perspective that is felt through the body and hands – language is also going to emanate from a tactile-bodily perspective. 

Who Are the Experts?

We learn language from the people that come before us. Language is passed on to us from people who are expert in a form of communication that already exists, and in most cases, shared by many others. For the person who is congenitally deafblind and whose language might emanate from a tactile-bodily experience, who is the expert that can pass on language to them? They have no expert in their tactile-bodily language because theirs is a language that does not exist on a formal, widely used level. How then do they learn to communicate? How does language become common? How can we seeing-hearing people become expert in a language that does not exist?

Social Stories

As we have interactions and experiences in the world, we form social stories that make up our lives. These stories give us a time and place in the world. They offer context to our lives and provide a sense of self. We then use artifacts to record our stories in the form of pictures, video clips, and written journals. These artifacts provide us with some sense of permanence to our experiences.  They provide a form for reminiscing with others and a static context to our oral stories. 

Because people are social beings, we need a way to share our stories, to record our version of the world and offer our experiences to others. All of this points to a need for a common language. A language produced under social circumstances, with other people. We are dependent upon the knowledge, concepts, and arguments from other people to help form our own concepts.

“We cannot teach concepts through discrete lessons,  but we can offer children experiences to help them develop concepts.” – Barbara Miles

One way we help our children who are deafblind begin to create their social stories is through the sharing of the world. We must follow the child into a shared experience. What does the child find interesting? What draws their attention? How do we encounter the world together? 

Dialogicality or Self-talk

We perceive the world both as an individual and as what we do in the context of others. We explore our world, we think about it, process it, and form concepts and ideas from our experiences. It might be what we call “thinking”. Sometimes thinking manifests itself as an internal dialogue; other times we do this thinking out-loud with other people. 

We could describe thinking as an ongoing internal conversation between two selves. This perception enters into our self-dialogue and also into our conversations with others. Lev Vygotsky, a psychologist specializing in child development, refers to this internal conversation as “dialogicality of the mind”. He suggests that we begin using language as a social interaction tool first, and then later for self-guidance or thinking out loud. Eventually our self-talk becomes inner speech. What does that self-talk look like for a child who is congenitally deafblind? Is it a bodily sensation?

Tactile-Bodily Experience

To understand the tactile perspective of a child who is deafblind we must think further than our own fingertips. When we say “tactile perspective”, we seeing-hearing people think primarily of what we touch through our hands. 

Consider what information we gather from the hair on our arms moving when the breeze is gently blowing on a sunny day. We feel the sun on our face even if we may not pay particular attention to it. We are aware of the breeze even though we may focus more on something else. These sensations come to us tactually. Automatically, much like visual and auditory information. 

However, if we lack the visual reference of the sun in the sky or the auditory reference of the breeze moving through the trees, how might we relate to these concepts?   What is the language we use to communicate this tactile-bodily feeling of the breeze in our hair or the sun on our face?

Surely, the English word “sun” has a different meaning here; not one that is bright, yellow, or setting on the horizon. From a tactile-body perspective, we might use language such as “warm” or “hot”, and express that language through movement and touch sensation. What does the word “breeze” or “wind” mean in this context?  It is not enough for us to speak or sign these words. We must express ourselves through the modal context of the tactile-bodily experience.

This is the challenge we face, however, if we want to share the experience with the child who is congenitally deafblind. We must allow ourselves to be open to their world.


In the world of deafblind education, we are just beginning to ask ourselves these questions. We are exploring these questions in the Deafblind Interaction section on the new Texas Deafblind Project website, We invite you to join us on our journey!

Note from the Author: I would like to thank Bernadette van den Tillaart, Barbara Miles, Dr. Paul Hart, and Dr. Jan van Dijk for their on-going and shared wisdom. 

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