Barbara Miles is a communication specialist/consultant and teacher, experienced with all ages and levels of persons who are deaf-blind. She has taught regional, national and international seminars on communication issues for children who are deaf-blind. Her articles have been published in professional journals & newsletters and she is co-author of the book “Remarkable Conversations.”
Revised January 2005
Imagine this: In the living room of the Perez house it is getting close to bedtime. Manuel, 6, and his sister Julia, 4, are asking for their usual bedtime story. Mrs. Perez goes to get a storybook from the basket near the couch. Then she hears the cries of her 2-year-old, José, who is lying in a crib on the other side of the room. She goes to the crib and bends down to pick up José, still holding the book. Manuel and Julia are restless, clamoring for their story. Mrs. Perez is torn. She imagines that José wants to belong to this nightly ritual. But José is deaf-blind. He can’t see the book, or hear the words as she reads them. She can’t imagine how to include him, or what use it would be anyway. She doesn’t know any other children who are deaf-blind, and she hasn’t considered reading to be a possibility for him (or for anyone who is deaf-blind, for that matter).
But tonight she senses this young child’s desire to be included, and she wants him with her and the other children. So, for the first time, she brings José into this family ritual. She holds him on her lap as Julia and Manuel cuddle on either side of her on the couch. Mr. Perez comes in from work just then and joins them. After greeting his wife and two oldest children, he sits next to Manuel. He reaches over to invite José to touch his beard, his usual way of greeting his son who cannot see or hear. Then he rests his hand lightly on José’s shoulder so José knows of his continuing presence. José quiets when he feels himself settled into his mother’s lap with his family around. He senses his mother’s breathing and feels the vibrations of sound in her chest as she reads. José’s hand can feel his sister’s and brother’s arms as they alternately turn each page — their long-established routine. José can smell the paper of the book — he buries his head in the crevice between the pages several times, and smiles with delight.
This evening is José’s first experience with literacy. In the nights that follow, Mr. and Mrs. Perez regularly include José. Over time, the experience gains more and more meaning for him. And then, as a result of help from educators of children who are deaf-blind, the Perez family is able to make and acquire adapted materials, including simple books that have both print and braille, and that have tactile pictures that José can feel. Manuel and Julia sometimes help make the pictures in their own favorite books accessible to José by pasting material on them, and by using pipe cleaners and glue to make outlines that his little hands can feel. Over time, too, the entire family learns sign language, so they can translate the language of the stories that José cannot hear into a form he can feel. Mrs. Perez’s initial instinct to include José in this family story time blossoms into a lifetime of reading and writing experience for this child who is deaf-blind.
Each person who is deaf-blind—whatever her sensory, mental, and physical abilities—deserves the opportunity to become literate in all the ways of which she is capable. Reading and writing are especially crucial for one whose world is narrowed because of vision and hearing losses. Literacy can enable such a person to exchange information and ideas, and develop relationships that would otherwise be out of reach.
Literacy involves the use of language, whether the language is in print or in braille. Although not all persons with deaf-blindness will achieve formal literacy, it is important to consider the communication value that aspects of early literacy can provide. Being able to “read” a schedule that consists of objects arranged in the order of the events they represent, for example, can be of great benefit to someone who is deaf-blind, even if that person cannot read print or braille. Likewise, being able to point to a picture from a menu of pictures in order to express a desire or make a comment can considerably improve the life of a person who is deaf-blind with little formal language.
What is more, society deserves the increased opportunity to get to know the thoughts, feelings, and ideas of persons who are deaf-blind. A person who is deaf-blind and who can read and write or who can use an object or picture communication system can communicate more and more with increasing numbers of persons in their immediate and distant environments. This person also has the potential of communicating with increasing precision and depth. Getting to know persons who are deaf-blind is likely to benefit many members of society whose experience of the world is limited to vision and hearing, and who thereby miss the uniqueness of experiencing the world primarily through touch.
Picture a woman who can neither see nor hear. Imagine too that she can read and write and that she has access to a computer with braille output and input devices. This woman is able to communicate with people all around the world through the Internet and has access to vast stores of information. Given the availability of today’s technology, while she is on-line this person is practically not handicapped. Her ability to read and write is her key to relationships and interactions undreamed of even a decade ago. Perhaps, just as importantly, it enables others, who might not otherwise have the opportunity, to get to know her.
Likewise, a person who is deaf-blind and who has neither the cognitive ability nor the interest in using the Internet can benefit from literacy in countless other ways. A picture/print or object/braille communication system may allow him to communicate his desires and ideas to people around him; picture/print/braille recipes may enable him to cook independently; being able to read labels on food items may give him many choices at the store; writing and drawing in a daily journal may enable him to express himself, reflect upon his own past experiences, and share experiences with people not present at the time they occurred. These are only a few of the possibilities.
The opportunities that literacy provides to persons who are deaf-blind, and thereby to society at large, are vast. What is more, opportunities are increasing all the time as technology develops and as people—parents, educators, therapists, and people who are deaf-blind themselves—broaden their ideas of what literacy offers to people with limited vision and hearing.
Literacy generally refers to the ability to read and write. Reading and writing are symbolic systems that allow people to receive and send information across distances of time and space. Reading and writing have contributed significantly to the development of societies, cultures, and technologies. They allow people to transmit knowledge from generation to generation and from place to place.
There is now a field of educational research devoted to emergent literacy. It considers both reading and writing development from the child’s perspective. Bloome and Green (1984) stated “Literacy is seen not just as a cognitive process, but also as a social, psychological, and linguistic process” (Dziwulski, 1992, p. 3).
When we think about literacy as it relates to people who are deaf-blind, it is important that we expand our conventional notions of reading and writing to include not only emergent literacy experiences, but also to include the various modes of literacy. If we conceive of literacy as the ability to read and write newsprint-sized print, for example, our conception will automatically exclude most persons with deaf-blindness. For a definition of deaf-blindness, refer to the DB-LINK publication “Overview on Deaf-Blindness.” Fortunately for all people who are totally blind, Louis Braille invented a method of reading and writing that does not depend upon sight. And fortunately for people with low vision, engineers have invented a variety of large-print technologies. We, as educators, friends, and family members of persons who are deaf-blind, are challenged to become equally visionary when conceiving of reading and writing systems and ways of educating that can accommodate persons with deaf-blindness. Some of these people have unique visual difficulties, some have uniquely developing language abilities, some have cognitive challenges, and others have physical limitations. None of these should be a barrier to the development of some kind (or kinds) of literacy.
When a teacher or a family uses an object schedule system (sometimes referred to as a “calendar box”) with a child who is deaf-blind, that person is using a kind of proto-literacy to communicate with the child. A series of objects, placed in boxes or hung on the wall, and representing a corresponding series of activities, is a kind of calendar which the child without vision or hearing can read. As her hands touch each object from left to right, she gets information about the future, what will happen that day (or week, or month, depending on the size of the schedule). As she develops more abstract cognitive skills, these concrete objects may be paired with or replaced with pictures, print, or braille. Likewise, if she spontaneously goes to the calendar and picks up a ball and carries it to her teacher as an indication that she would like to go out and play, we might say that she is engaging in a kind of proto-literacy (or even proto-writing) behavior. She has read which symbol represents her desire and has brought that symbol to the teacher to read. She is using a symbol to convey information about what she wants to happen in the future. And her life choices are considerably enriched by this kind of literacy. People hoping to enlarge literacy opportunities for people who are deaf-blind need to continue to invent ways to make literacy available. The possibilities are countless.
Literacy never exists in a vacuum. People read and write for many purposes, most of them social. At home bedtime stories provide young children with a foundation for literacy. Even though they are not reading, they are learning the social value of the printed symbol and are beginning to understand that pictures and symbols convey information. They are also learning that reading these symbols is fun.
As we seek to share literacy skills with persons who are deaf-blind, we need to be aware of what purposes these skills will serve. We need to ensure access to as many of the functions of literacy in their lives as possible—comparable to the access that hearing-sighted people have. We need a menu of possibilities.
Think about the past few weeks of your life. You can undoubtedly think of many ways in which you have used reading and writing. People who are deaf-blind deserve to use reading and writing in a corresponding variety of ways. Here is a beginning list of the pragmatic functions of reading and writing, together with some examples of each function. As you read the list, you might think about a person who is deaf-blind and consider how that person could benefit from each of these uses if they were made available by means of adaptations.
(Adapted from Dziwulski, 1992)
Many educators of children and adults with severe or profound disabilities (including those who are deaf-blind) may discount some of these functions, thinking that they may not be possible or appropriate for children who have particular challenges. Self-expression, entering fantasy worlds, and maintaining relationships are several functions that are frequently absent from curricula for children who are deaf-blind or who have severe disabilities. None of these functions need be inaccessible to any child. Our own ingenuity, creativity, and determination will be the keys that will allow a child access to any of these functions of literacy. Without exposure to them, it is impossible for a child to acquire them.
If you are a teacher or a parent reading this list, you might think also about how to expose the child or adult who is deaf-blind to an increasing number of these uses of literacy. You may draw her attention to a t-shirt logo the next time you see one, or you may show her a newspaper ad, or a wedding invitation, and explain what each says in a way that the child may understand. Even a child who is totally blind can benefit from these gestures and the simple explanations that accompany them. In fact, being shown these things by an adult, and having them explained, is the only way in which many children and adults who are deaf-blind will ever know that they exist.
There have been many interesting recent developments in the teaching of literacy to children and adults with severe special needs, as well as those with hearing impairments and those with linguistic and cultural differences. Many of these developments have important implications for helping children and adults who are deaf-blind learn to read.
This recent research and longtime experience point to several basic conditions necessary for the development of literacy. Each of these conditions implies a variety of possible opportunities that can, and should, be made available to people with vision and hearing impairments.
Children with good vision encounter print and its uses from the day they are born. This is especially true in highly literate societies and in families where literacy is central. Children in such environments routinely see people reading and writing for many different purposes. It is widely acknowledged that children who grow up in literate families generally have good reading skills; this is probably due to the motivation instilled in a child who sees the people he interacts with and admires using reading and writing regularly.
A child who is deaf-blind usually does not have opportunities to observe people reading and writing unless they are specifically provided. Here are some ideas for ways to create these experiences:
Conversational interaction ensures that the development of reading and writing occurs within meaningful social contexts. It enhances the communication abilities of the child or adult and provides the teacher or parent with continuous feedback about the child’s or the adult’s understanding. Children who can see and hear have countless opportunities for conversations about the written word—as they are read stories by their parents or teachers, as they walk or drive by signs in the community and ask about them, as they observe Mother writing a grocery list and chime in with their preferences, as they talk to Father about a newspaper story he has just read, as they show their teacher a picture they have just drawn and explain the scribbles written above it, as they ask for help spelling a word in a story they are writing, and as they discuss their feelings about a book they are reading with their fellow classmates. Children who are deaf-blind need parallel opportunities for interactions around literacy experiences. These might include the following:
Accessibility includes the adaptation of materials to compensate for sensory losses and physical disabilities. It takes into account cognitive understanding and individual interests. Adapting books and materials for the individual’s sensory, cognitive, and motor needs is necessary to give the child access to the information. And, as with oral and signed language, unless the child receives a great deal of accessible print or braille input, she cannot produce any meaningful output in print or braille. All children and adults need books that are interesting to them: books that have accessible print or braille, pictures, or tactile illustrations; books that are about subjects that are interesting; and books that use language that is appropriate to the child’s or adult’s individual level of understanding. To the extent that they are possible and practical, they also need accessible labels and other forms of all the pragmatic uses of literacy mentioned above.
Because each child and adult is so unique, many books and materials will need to be made or adapted specially (see the section below on individual experiences). The task of adapting books and materials is one that a teacher and child can often do together, or the child can do with another classmate. For example, the child can participate in brailling or printing words (or watch as the teacher does it), or in making and gluing tactile pictures to pages, or in the writing of the stories themselves. This participation serves to help the child understand how things are created, cuts down on out-of-class preparation time for the teacher, and gives classmates something to share and do together.
Accessibility also necessitates adapting the environment so the child or adult has the time and physical ability to interact with materials, as well as the social encouragement and motivation to do so. Here are some specific suggestions:
Accessibility also means that the child is physically able to get the materials and is encouraged to do so. Each classroom should have a library where books are displayed at a level where the children can reach them. Writing and drawing materials should also be accessible. In addition, the child should have time to use these materials. In the home, too, there can be a labeled box, bin, or shelf designated for books, pictures and related materials.
A child who is deaf-blind and who also may have additional disabilities usually has unique and limited experiences. Often such a child’s world extends no further than the reach of her hands; her concepts are therefore very basic and concrete. The teacher must think about how to gradually expand the children’s experiences and thereby assist them in building concepts about the world beyond themselves. Experiences become the vehicle for developing concepts, upon which language and literacy can be mapped.
The experience of a child who is deaf-blind differs so significantly from most children’s experience that standard reading programs are not usually effective in the beginning stages of literacy learning. Reading and writing need to be meaningfully connected to the hands-on explorations, experiences, and interests of each child who is deaf-blind. Here are some ways to make those connections:
Children with adequate vision routinely have the opportunity to scribble, draw, use computer keyboards, look at magazines, read signs, or thumb through books. In an interesting study, it was noted that while only 15 % of children entering school believe they can read, fully 90% believe they can write (Rebecca Edmiaston). Scribbling and drawing are a kind of proto-writing. In the child’s mind, they are a form of expression equivalent to what grown-ups do when they write. Opportunities for independent use of materials build confidence. Parallel opportunities need to be provided for the child or adult who cannot see or who has low vision and for the one who has physical limitations. Very often teachers of children who are deaf-blind or who have multiple disabilities are reluctant to let the child have genuinely independent experiences of exploration. But these are necessary. Make the following resources available:
The child who is deaf-blind should have frequent visual and/or tactual access to others who are also engaging in free exploration of materials. Simply placing a child in front of some clay, and then sitting and watching while she uses it, will not be as useful to her as joining her in using clay for free expression. Without the social aspect, it becomes a task that has little meaning. Knowing that others also express themselves in a variety of ways gives motivation to the child and opens up more possibilities. Be extremely careful not to impose your own expectations on the child. Simply engage in her own form of expression and be gently attentive to whatever the child seeks to do by herself.
Literacy can unlock countless worlds for the child or adult who is deaf-blind. Each of us who knows someone who is deaf-blind can invent ways for him or her to expand their possibilities for reading and writing. We can begin by sharing with them our own reading and writing experiences and by making materials accessible for them. We can encourage self-expression with gesture, clay, scribble, braille, writing—whatever forms each person can use. We can also regard each experience that we share with a person who is deaf-blind as a potential opportunity for literacy—we can save an object from the experience, we can write a story about it along with the child or adult, we can draw a picture and encourage the child to draw a picture, and we can write a letter or an e-mail to them about the experience. The opportunities are numerous. We are all inventors. We have much to learn together and much excitement to share. As we seek to share literacy skills with those who are deaf-blind, we can be continually aware of, and respectful of, the doors that are being opened, not only for those who are deaf-blind, but also for those who can see and hear and who thus have the opportunity to find out about the experiences of people whose hands and bodies and eyes and ears know the world in unique ways.
Gratitude to Sara Gaar, who helped substantially with this article. Many thanks also to Steve Perreault, Barbara McLetchie, Gail Leslie, Karen Olson, Marianne Riggio, Julie Baumgarner, and the teachers and students of CAIS and SOCIEVEN in Caracas, Venezuela. Thanks also to all the students who are deaf-blind and their teachers who continually seek for new ways to communicate with each other and with the world around them.
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Braille materials can be obtained from:
High-interest, low vocabulary materials can be obtained from: