Understanding Deafblindness CHAPTER Barbara Miles and 2 Marianne Riggio

IN THIS CHAPTER 22 Defining the Population 24 A Changing Population of Children 24 Why a Categorical Definition? 25 Challenges Shared by People Who Are Deafblind 27 Importance of Assessment 27 Impact of Sensory Losses on Attachment, Communication, and Concept Development 35 Importance of Diagnosis and Assessment 35 Cultural Attitudes Toward Deafblindness 22 CHAPTER 2: Understanding Deafblindness

The term,“children with deaf-blind­ ness,” means children and youth hav­ ing auditory and visual impairments, the combination of which creates such In order to help severe communication and other devel­ A PERSON WHO IS DEAFBLIND COMMUNICATE opmental and learning needs that they cannot be appropriately educated with­ TO THE BEST OF HIS OR HER ABILITY, WE out special education and related ser­ vices, beyond those that would be pro­ NEED TO UNDERSTAND DEAFBLINDNESS AND vided solely for children with hearing HOW IT AFFECTS COMMUNICATION.FIRST, impairments, visual impairments, or severe disabilities, to address their edu­ WHAT EXACTLY IS DEAFBLINDNESS, AND WHO cational needs due to these concurrent disabilities. (PL101-476, 20 USC, IS A DEAFBLIND PERSON? Chapter 33, Section 1422[2]) So, a person who is deafblind ONE MIGHT INITIALLY SAY, WITH A LOT OF COMMON is one who cannot simply be thought of as a blind person with SENSE, THAT A PERSON WHO IS DEAFBLIND IS SOME­ an additional disability (and there­ fore able to function without help ONE WHO CAN NEITHER SEE NOR HEAR OWEVER . H , in an environment geared toward AS ANYONE WHO HAS ENCOUNTERED EITHER DEAF helping people who are blind). A person who is deafblind also OR BLIND PERSONS KNOWS, THERE ARE DEGREES OF cannot simply be thought of as a person who is deaf and has an DEAFNESS AND DEGREES OF BLINDNESS.THERE ARE additional disability, but could easily be accommodated in a PEOPLE WHO HAVE MORE OR LESS SEVERE VISION school program for children who AND/OR HEARING IMPAIRMENTS AND DIFFERENT are deaf. Even putting persons who are deafblind into the cate­ KINDS OF HEARING AND VISION LOSSES, AND THERE gory of “severely or multiply dis­ abled” will not, by itself, do justice ARE MANY KINDS OF VISION AND HEARING IMPAIR­ to the nature of their disabilities and their needs.Why? That is a MENTS.SO, THE QUESTION THEN BECOMES THE FOL­ question that we hope to address LOWING:WHAT DEGREE AND KIND OF HEARING AND throughout this chapter.We want to look at the unique nature of VISION IMPAIRMENTS, IN WHAT COMBINATION, CON­ deafblindness as a disability and the effect it has upon an individ­ STITUTE WHAT WE WILL TERM “DEAFBLINDNESS”? ual’s ability to communicate. It is important to note here that throughout this book we will use the term “deafblindness” In this chapter, we will look at Defining the Population as a single word. In 1991, the how deafblindness is defined, For our purposes, and for legal International Association for the explore the diversity within the purposes, too, the definition of Education of the Deafblind (now population of people whom we deafblindness is primarily an known as Deafblind International) call deafblind, and explore the educational one. Here is the resolved to adopt this spelling impact that this disability has on a definition of deafblindness that rather than use the hyphenated person. Most importantly, we want appears in U.S. Federal law term “deaf-blindness” to define the to look at the unique nature of governing special education population of infants, children and deafblindness as a disability and (Individuals with Disabilities adults we are talking about here. the effect it has on the individual’s Education Act [IDEA]): Although this change may not ability to communicate. seem so significant, it demonstrates CHAPTER 2: Understanding Deafblindness 23

that this is a unique disability, and The current population of infants, children and adults who are deaf- not the sum total of a vision and a blind is very diverse, although they all have common challenges caused hearing loss. by this disability. We must also take note of the fact that the above U.S. definition of deafblindness is an extremely broad one. It includes, for exam­ ple, the range of children and young adults described in these brief case descriptions: • A three-year-old boy who is totally blind has a moderate- severe hearing loss, apparently normal motor and intellectual abilities, is just beginning to walk on his own, but has not yet learned any expressive language. • A six-year-old with congenital rubella syndrome who is pro­ foundly deaf, partially sighted, and has behavior disorders attributed to an attention deficit disorder. Intelligence estimates are that she is severe­ ly developmentally delayed. • A 16-year-old girl with pro­ found deafness, visual impair­ ment, and severe cerebral palsy affecting all four limbs. Her intelligence cannot be accu­ rately assessed because of lack of motoric functioning and absence of any consistent accessible language input during the course of her life. She has no apparent receptive or expressive language skills. • A two-year-old girl who is medically fragile, born prema­ turely and suffering from pre­ natal brain hemorrhages, with profound deafness and total blindness, now cared for in a pediatric nursing home. • A 20-year-old man who is congenitally deaf and adventi­ tiously blind, with above aver­ age intelligence; presently edu­ cated for a half-day in a special setting for youth who are deaf- blind and for a second half-day in a mainstream situation in a 24 CHAPTER 2: Understanding Deafblindness

boys’ preparatory school where for the Blind in 1837. Early pro­ children and to provide high quali­ he attends classes with the help grams for children who are deaf- ty educational services. of a sign language interpreter. blind were academically based He plans to attend college. and were usually associated with Why a Categorical These brief descriptions are a schools for the blind.They tended Definition? small sampling of the kinds of to serve children whose sole dis­ Given that children and young individuals who might rightfully ability was deafblindness and who adults who have combined vision be included in the category of lost their sight or hearing after and hearing losses have a wide those with deafblindness. From a birth, rather than those who were range of needs, one might well sensory standpoint, the disability born with this disability.The birth ask,“Why is it useful to think of of deafblindness can be broadly of about 5,000 children who were all under the one category of deaf- divided into four categories: deafblind due to the rubella epi­ blindness?” Our experience, from demic of 1964-1965 changed the • Those who are totally deaf and our many years of teaching the nature of the education of chil­ totally blind whole range of children included dren who are deafblind. in this educational term “deaf­ • Those who are totally deaf and In 1968, the Federal govern­ blindness” is that it is, in fact, a visually impaired ment funded 10 regional centers very useful category for a number • Those who are hard of hearing for deafblind services around the of reasons. and totally blind United States.They were estab­ • Those who have some use of lished to develop model programs Communication:The residual hearing and vision and provide training to meet the Central Priority needs of these children who were When we define a child’s disability To further understand the born with congenital rubella syn­ as deafblindness, thereby placing individual with deafblindness, we drome.This population had, relative the primary emphasis upon his must consider age of onset; any to the current population of chil­ sensory impairments, we then correction (i.e., surgery, lenses, dren, a defined set of medical char­ establish communication as the hearing aids etc.); the extent of acteristics (e.g., heart conditions, central educational priority.This is additional physical and cognitive glaucoma, cataracts, sensory neural so because sight and hearing are disabilities; and additional health hearing losses).Although there was the primary avenues of communi­ impairments.These are all factors variation among individual chil­ cation.We explained in the first that will affect the way we think dren, there were many commonali­ chapter why we consider commu­ about a child who is deafblind and ties, especially regarding educational nication skills to be crucial in that will help determine specific approaches that were effective. achieving the optimal quality of strategies we should use for The widening of the identified life for any individual.We believe instruction.Whatever specific sen­ deafblind population since 1965 has that viewing a student from the sory impairments and additional occurred principally for two rea­ perspective of deafblindness helps disabilities a child has, each one sons.Advances in medical technol­ an educator to think most clearly who is deafblind will require edu­ ogy have resulted in saving the lives and creatively about how to help cation by a teacher who has an of children born prematurely him achieve his best communica­ appreciation of this unique disabil­ and/or with multiple congenital tive potential. ity. She can then build a relation­ anomalies; these children might, ship with the individual child that before this era, have died in infancy. Need for Specific will maximize that individual’s Also, through improved medical Educational Expertise connection with other people and diagnostics and advancements in We hope to continually improve situations in the environment. the study of genetics, we are mak­ the body of knowledge and skills ing strides in identifying children among teachers, families, caregivers, A Changing Population with low-prevalence genetic disor- of Children and other professionals and para­ ders.This means that many children professionals; we are confident that The population of children with are being served who previously this increased knowledge will help deafblindness has widened consid­ would not have been identified as learners who are deafblind to erably during recent years. In the having vision and hearing impair­ achieve their maximum potential. United States, education of chil­ ments. Moreover, since there are In our efforts to do this, it is dren who are deafblind began in now legislated mandates to serve all important that we have a strong earnest with the education of children with disabilities, there has understanding of just who is deaf- Laura Bridgman at Perkins School been more effort to identify such blind and what their needs are. CHAPTER 2: Understanding Deafblindness 25

In order to train people to of persons with deafblindness, to think of her alongside others provide high quality services for either through actual visits or with dual sensory impairments the broad population of children through reading case studies (such (regardless of intelligence level, and young adults who are deaf- as are included in this text), then social status, physical impairments, blind, we need to know as much you will have a more effective way etc.).Through this process of as possible about children and pro- of imagining how to teach the heightening our awareness of the grams.There needs to be a defined child who is deafblind and is in impact of this disability, we hope field of deafblindness.Without a your charge. Comparing her solely not to segregate, but to relate to way of knowing who children are with the severely impaired chil­ the person who is deafblind in a and where they are, and without dren you know will limit your way that will enable him or her to having some knowledge about the ways of understanding her and of participate more fully in society. educational practices that have teaching her. (The same would be been effective in educating them, true if she were in a class of chil­ Challenges Shared by teachers, children and family dren who were blind or deaf and People Who Are Deafblind members remain isolated.They you thought of her primarily as lack information and support blind, or deaf, and taught her from Isolation: As we have said earlier, necessary to meet the educational that perspective only.) Similarly, if the senses of vision and hearing are needs of the individual child for you are able to connect with other called distance senses.These senses whom they are responsible. teachers who are teaching children connect the person with the world In most developed countries, with deafblindness, you can share that extends beyond his or her per­ there is a trend now toward information and observations, and sonal body space. It is through decentralization of special educa­ can thereby become a more effec­ these senses that individuals who tion services. Because of this trend, tive teacher. Making such a con­ have sight and hearing learn most it has become increasingly difficult nection can depend on thinking of concepts about the world and for teachers to collaborate with develop social relationships. their peers who are teaching chil­ A person who is deafblind dren with similar learning needs. cannot listen to or read the sign Now, many teachers of children language of someone who is who are deafblind have never seen speaking or signing to him at a another child with this disability, distance. She cannot passively nor have they talked with other observe what other people are teachers who are facing the same doing, overhear conversations, or challenges.We need, therefore, to observe with clarity the environ­ encourage the development of ment around her. Because deaf- central resources that can develop blindness severely limits the expertise, provide support, and opportunity for a person to have connect educators and families contact with people and things in who have children who are deaf- the environment, all people who blind. Emphasizing the uniqueness are deafblind, regardless of their of deafblindness as a disability can cognitive or physical capabilities, help overcome their isolation. It is are reliant to some extent upon very helpful for teachers of chil­ others to help them access, inter­ dren with deafblindness to have a pret, and organize information familiarity with other persons who from the surrounding world. It is are deafblind, and with other important to remember, as we teachers who are teaching students think about our interactions with individuals who are deafblind, that who are deafblind. Laura Bridgman and Dr. Samuel If you are teaching a child who Gridley Howe. they are essentially isolated unless is thought of as being “deafblind,” they are in close proximity, or in it will help you greatly in planning the child as having deafblindness as direct physical contact, with for that child and in envisioning a primary disability. another person. how to teach her if you can visit The way we categorize in our The sense of isolation caused and get to know a range of per­ minds affects the way we behave. by deafblindness creates the great­ sons who are deafblind, such as Saying that a child is deafblind est barriers in the life of a person those described above. If you have highlights her sensory impairments with this disability. It is important experience with this broad range as primary and implicitly asks us to note that this sense of isolation 26 CHAPTER 2: Understanding Deafblindness

does not occur only in the portion of the deafblind population who have no usable sight or hearing. For the person who is totally blind, and has some usable hear­ ing, isolation begins as soon as the conversation stops. Or, when sev­ eral people converse in a group, he may not be able to follow the rapid shifts in conversation from person to person and topic to top­ ic.This “missing” of large pieces of what is being said isolates the indi­ vidual from the group discussion. Once the person who is deafblind has lost the flow of a conversation, he is likely to become inhibited about participating for fear of say­ ing something that is inappropriate or has already been said. Persons with deafblindness Many children who are deafblind have additional complex health challenges. have a number of additional char­ acteristics in common that, while variety of people, depending upon broad experience of social customs they are not necessarily obvious at the needs of the person and the and amenities. Lacking these first glance, reveal themselves as situation. Not all people who are experiences, a person who is deaf- important considerations in teach­ deafblind need a certified inter­ blind, no matter how intelligent, ing (Robbins, 1983). In addition preter.This will depend on indi­ may appear socially awkward or to the communication difficulty vidual needs. But all people who rude, when in fact he simply has highlighted above, we discuss are deafblind routinely need some­ not had the chance to participate below some experiences and needs one to connect them to people, in exchanges of facial expressions generally shared by persons who events and places. and gestures which are very impor­ tant aspects of social interactions. are deafblind. Limited Number and Variety of Need for Individual Instruction: Experiences: Not being able to Multiple Hospitalizations: The Either touch or very close prox­ see and hear narrows one’s world, majority of the current population imity is required in order to make often so much so that it extends of children who are deafblind have contact meaningful for someone no further than the fingertips. If had prolonged hospitalizations for with both vision and hearing you think for a moment about often life-threatening illnesses. impairments. how much information you These hospitalizations have fre­ receive everyday through your quently taken great emotional toll Reliance Upon Interpreters: eyes and ears, you begin to sense on these children and their fami- Usually a person who is deafblind what a person who is deafblind is lies.They may be the source of needs to have the distant world missing. Multiply this by days, anxieties that may seem groundless interpreted for him so he may weeks, months, years, and you have to an insensitive observer, but are have access to it.This interpreta­ an even clearer idea of the volume actually rooted in a great deal of tion may happen in a number of of missing information. concrete experience. different ways. It may include not The challenges listed above Limited Social Experiences: only traditional interpreting of greatly affect the development of Usually a person who is deafblind conversations but also descriptions the whole person. In spite of cannot communicate with more of physical surroundings and con­ these challenges, people who are than one person at a time.This text, as well as simplified descrip­ deafblind have unique opportuni­ means their social experiences are tions of interactions. In any case, ties for intimacy and depth of very different from those of hear­ a close working relationship with experience that sighted-hearing ing and sighted people, who are an interpreter is shared by many people may lack. Educators must accustomed to being relatively at people who are deafblind.This take into account these differences ease in a group, and who have a interpreting may be done by a and consider how they may influ­ CHAPTER 2: Understanding Deafblindness 27

ence interactions with people cally affects communication.What of most people’s learning comes who are deafblind. does it feel like to have limited, through vision (Smith & Cote, or no, vision and hearing? What 1982).This sounds very dramatic Importance of does this mean in terms of how and may seem overstated, but this Assessment one learns to communicate? statistic rightfully highlights the The population of infants, children Throughout this book we great importance of a child’s visual and adults who are deafblind is will continue to talk about deaf- connection with the environ­ now very diverse, and this diversity blindness as a unique disability; ment—with objects, people, makes it important to recognize a however, we also need to be actions, and relationships. child as deafblind as early as possible. knowledgeable about the impact One of the most comprehen­ We need to be certain we are rec­ of each sensory loss. sive and accessible works done on ognizing the significant impact of the effects of blindness on com­ the child’s combined sensory losses Blindness munication is by Selma Fraiberg, a on his or her development, and we If a child is born totally blind, how psychiatrist who became interested must address the needs that these will that limitation affect her con­ in blindness in the 1960s, when sensory losses create within the nection with those around her? she met a child who was blind and child’s educational program. The literature estimates that 75% who presented unique difficulties. In identifying children as deaf- It is important for teachers to know the educational practices that are effective blind, we are also highlighting in teaching children who are deafblind. Many children, for example, require the importance of sensory assess­ tactile sign language for optimal understanding. ment as a crucial piece of the edu­ cational assessment process. Often, especially in the population of children with significant addition­ al, very “visible” disabilities, it is easy to overlook the need to fully assess the child’s vision and hear­ ing. For, example, when a child has significant health and physical challenges, people will often say, “His vision and hearing are the least of his problems.”When a child has severe cognitive delays, the assessment of vision and hear­ ing will often become a low pri­ ority among people who are not knowledgeable about deafblind­ ness. However, knowing as precise­ ly as possible how a child receives information, and understanding the possibilities for treatment (e.g., assistive listening devices, glasses, corrective surgery) and interven­ tion, can significantly expand the child’s learning possibilities.

Impact of Sensory Losses on Attachment, Communication, and Concept Development We have just defined deafblindness as it relates to a child’s educational needs.We also need to think about what deafblindness means experientially and how it specifi­ 28 CHAPTER 2: Understanding Deafblindness

visual problems (which would Establishing Object Permanence: serve to explain to her the child’s For an infant who is blind and lack of smiling). She may with­ who is only a few months old, an draw from her infant. object does not exist if he is not Dr. Fraiberg found that most touching it. Even toys in the mothers of babies who were blind baby’s crib might as well not exist needed to be taught not to look if he doesn’t accidentally put his for responsiveness and initiative in hand on them or roll over onto their children’s faces, but to look them.The sighted infant learns instead at their body language, about the existence of objects especially at their hands. She apart from himself by learning to points out that this is not natural synthesize information from his for us because we are so condi­ eyes, his hands, and his mouth.The tioned both to look at another’s play that sighted babies do in front face for responsiveness and to of their faces—at first accidentally, express ourselves through our own and later intentionally—with their faces. In fact, for a sighted infant, mouths, their hands, their fingers, the eyes are a main way of initiat­ and with toys, teaches them that ing social exchange.A baby, what they see has substantiality. through her eyes, expresses atten­ Through repeated experimenta­ Children who are deafblind are isolat­ ed unless they are in close proximity tion, longing, doubt, boredom, tion, practiced for hours at a time, or in direct physical contact with questioning. Fraiberg found that they learn that certain movements another person. when the mothers of blind babies create certain visual results, and were taught to look at their chil­ that certain visual stimuli have cer­ She has studied blind children dren’s hands rather than their tain physical feelings associated extensively and her book, Insights faces for these signs of attention, with them. Gradually, through trial from the Blind, provides a sensitive excitement, exploration, and and error, they are able to reach account of the development of anticipation, they were richly for and grasp something they see communication skills in several rewarded by discovering that the with their eyes.They have come blind children. babies were, in fact, expressing a to trust the information from their eyes that tells them the object Bonding: Dr. Fraiberg carefully wide range of feelings and inter- observed the interactions between ests—emotions that were not evi­ they are not yet touching has sub­ infants who were blind and their dent on the children’s faces. Once stantiality, and, if reached for, will mothers, and tried to understand the mothers could see this, Dr. reward their open hands with tex­ what those interactions felt like Fraiberg discovered, a more satis­ ture and weight.They have come from both points of view—the fying dialogue could resume to believe this information so baby’s and the mother’s. One of between infant and parents.“Even surely that they trust that even if the first things she noticed was grief [over the diagnosis of blind­ the object is covered with a cloth, that often an “estrangement of ness] could be managed when the or dropped on the floor out of mother and child began in the baby brought his own rewards in sight, it still exists.This is what we early months” (Fraiberg, p. 60). response, in diversity of social call object permanence. This seemed to happen because exchange, and in becoming an Dr. Fraiberg found that children the blindness of the baby, for the active partner in the love relation­ who were blind had a harder time mother,“feels curiously like a ship” (p. 108).When such help than sighted children in establish­ rebuff if you do not know that the was not available, and when the ing object permanence.That is, baby is blind.”A sighted infant’s dialogue was not well established they could not as easily hold the smiles provide a great deal of rein­ between mother and baby, image of an object in their minds forcement for a new mother, and Fraiberg found that there often when the object was not physically they are in turn reinforced for the ensued social and emotional diffi­ present.The ability to do so is inti­ baby by the mother’s return culties for the children who were mately related to the ability to smiles.When this smile dialogue is blind, who were not able by name and categorize objects, and interrupted because a baby cannot themselves to discover adequate thus is clearly tied to language and see well, or at all, the mother may ways of relating socially without conceptual development. become depressed, especially if the initial experience of adequate Blind children, deprived of the there has been no diagnosis of relations with their mothers. visual connection with objects to CHAPTER 2: Understanding Deafblindness 29

one degree or another, must learn walk, but it was “educational work other, less direct ways of commu­ MOTHERS OF BABIES in the areas of human attachment nicating with the object-world or WHO ARE BLIND and prehension (reaching and learning about it—trusting its very NEED TO BE TAUGHT grasping)” (p. 278). She observed existence apart from their physical that an educational program that TO LOOK FOR connection with it. For a child provided training for the parents who is blind and can hear, the ear RESPONSIVENESS in bonding with their children and sound begin to substitute for IN THEIR BABIES’ and in helping their children learn the eye and sight. Clapping games, BODY LANGUAGE, about reaching “can confidently toys that make noise, the hand on ESPECIALLY wait for the baby to ‘invent’ father’s speaking mouth, the acci­ mobility for himself ” (p. 278). THEIR HANDS. dental and later intentional brush Then, cognitive and communica­ against a hanging bell—these are tion gains will follow naturally as the experiences that teach “ear­ the child begins to explore his hand coordination” and the begin­ Mobility: Another lag will happen world. ning of a sense of object perm­ too, if the child who is blind is not Use of Personal Pronouns, Self- anence. Given enough auditory helped to achieve object perma­ Concept and Time Concept: stimulus in place of visual stimulus nence.This child may be slow to Dr. Fraiberg observed that chil­ (and Fraiberg found that this develop mobility and may there­ dren who are blind experienced process could be greatly facilitated fore have additional cognitive and difficulty in one other area of through the parents’ sensitive pro­ communicative delays. Moving communication development. She vision of these experiences), the around in the world and exploring recounts the story of “Kathie,” a child who is blind will come to are ways in which a child comes very bright child who was blind trust that mother’s voice means to know about her world, develops and who, in spite of her intelli­ that mother is near, that a bell curiosity, and learns about the gence and rich language environ­ sound indicates the existence of a ways in which people and objects ment, experienced delays in her round metal object, that a lullaby are related to one another. Mobil­ ability to use personal pronouns sound tells that a favorite wind-up ity develops in large part, in a appropriately, in her development teddy bear is near, even if the sighted infant, as a result of vision. of a stable self-concept, and in her hands are not able at once to con­ Visual objects are “lures” for the development of time concepts (all tact these things. child—they draw her out into the of which seem to be related). One begins here to get a sense world. She learns to crawl by Whereas such stable concepts of the monumental task ahead of attempting to reach something she the infant who is both profoundly can see but cannot yet touch. She deaf and totally blind. Right here, learns to walk as her visual world at this most basic juncture of draws her upward.As she learns Mothers of blind infants must these skills, she becomes more of a learn the many ways their chil­ development where the baby must dren show signs of attention, come to know that objects exist conversationalist, asking questions, excitement, exploration and apart from him or herself, the baby protesting, requesting things. Her anticipation. who is deafblind has a very hard communication skills develop as task that will require much help she moves about in the world and patience. Likewise, his family more and more. will need a great deal of informa­ The child with sight and hear­ tion and support to build these ing is motivated to crawl toward early relationships. the brightly colored toy across the Children who are blind and do room or toward Grandma’s not receive help in establishing outstretched arms and encour­ object permanence will lag behind aging words.Without visual in language development because lures, or the sound lures that the ability to name objects de­ emerge with object perma­ pends upon some sense of their nence, a child who is blind will existence apart from oneself.With not be motivated to move for­ help, this naming facility will hap­ ward. Dr. Fraiberg found that it pen in due course, not far behind was not mobility training per se a normally sighted child’s ability. that helped children who are blind to learn to crawl and 30 CHAPTER 2: Understanding Deafblindness

about a sunset, a rainbow, stars? The absence of the experience of such things is only really a deficiency when viewed from the unreflective point of view of those of us who are sighted. If we are sighted people communicating with persons who are blind, we must be careful not to assume that their experiences match ours in all areas; we must remember, as we speak, to put ourselves in their shoes.We must not assume that lack of knowledge of some things we take for granted means that they are unintelligent or that communication is therefore impossible. It may actually be a Children with significant vision loss have more difficulty holding the image of an richer communication if we each object which is not physically present than do children who have vision. take the time to make sure we are understanding one another. are usually achieved by most sight­ ror, comparing visually one’s own ed children at somewhere around body with others’ bodies, all con­ The person who is sighted, from three years of age, Kathie did not tribute to a young child’s concept the point of view of the person achieve them until four years and of himself.A child who is blind who is blind, may actually be 10 months.According to Fraiberg, and who does not have these “deficient” in other senses. Sight the observation of Kathie taught experiences will have delays in usually provides a great percent­ her that “the acquisition of per­ forming this self-image. In fact, age of the information that we sonal pronouns goes beyond prac­ some children who are blind who receive about the world.Without tice with grammatical tools. It have not had any help may be that focus, or dependence on goes beyond the influence of the extraordinarily late in being able vision for connection, the other language environment. [It reflects to accurately use “I” and “you,” senses may become sharpened. the] extraordinary problems in and in being able to recount sto­ Jacques Lusseyran, a Frenchman constructing a self-image in the ries of their past experiences. Such who became blind, has described absence of vision” (p. 268). communicative delays may look some of his experiences of During the time from about like autistic behavior, but may heightened sensitivity. two-and-a-half to three years, actually have their basis in the lack As soon as my hands came to life when Dr. Fraiberg was observing of visual experience. they put me in a world where every­ Kathie with a view toward under­ Development of Abstract thing was an exchange of pressures. standing these aspects of her lan­ Concepts: Finally, we must men­ These pressures gathered together in guage development, she observed tion the effect that limited or shapes, and each one of the shapes that Kathie “could not represent absent vision is likely to have upon had meaning.As a child I spent hours herself through a doll or a toy.... conceptual development and, as leaning against objects and letting She could not recreate or invent a a result, upon communication.A them lean against me.Any blind per­ situation in play. She could not child who is blind gains knowl­ son can tell you that this gesture, this attend to a story or answer ques­ edge of the world through her exchange, gives him a satisfaction too tions regarding a story or tell a remaining senses: hearing, touch, deep for words. story herself. She could not spon­ taste, smell, and kinesthetic expe­ Touching the tomatoes in the gar­ taneously report an experience” rience. Some objects and ideas are den, and really touching them, touch­ (p. 256). In other words, she could particularly difficult to experience ing the walls of the house, the materi­ not yet “see herself as an object through these senses alone. How, als of the curtains or a clod of earth is to others” (p. 260).Vision is an for example, would one explain surely seeing them as fully as eyes can important aid to a sighted child what a cloud is to a child who is see. But it is more than seeing them, it in developing a self-concept. Such blind? She cannot see it, hear it, is tuning in on them and allowing the experiences as seeing one’s own touch it, taste it, or smell it.What current they hold to connect with one’s hands, seeing one’s image in a mir­ CHAPTER 2: Understanding Deafblindness 31

own, like electricity.To put it different­ a child can say his first words, he ly, this means an end of living in front OR AN INFANT has heard thousands of words and of things and a beginning of living F sentences thousands of times, and WHO IS BLIND with them. Never mind if the word has somehow begun to make sounds shocking, for this is love. AND WHO IS ONLY sense out of them. A child with­ You cannot keep your hands from A FEW MONTHS OLD, out hearing or with severely loving what they have really felt. AN OBJECT DOES impaired hearing does not have (Lusseyran, pp. 27-28.) NOT EXIST access to language input unless it is provided to him through special IF HE IS NOT Deafness means. Even certain kinds of rela­ We have seen at least some of the TOUCHING IT. tively moderate hearing losses that effects that blindness by itself is allow a person to hear at speech likely to have upon a person’s less communicative, less sponta­ levels can greatly restrict the use­ connection and communication neous, and less socially adept. ful linguistic information a child with the world.What about deaf­ These inhibitions may affect receives from his environment ness or hearing impairment? How his later language development because many significant sounds might an inability to hear affect because language skills grow out are obliterated. how a person connects with those of active engagement with the A child who is deaf or severely around him or her? world, and they do not flourish hearing impaired and who grows up in a hearing world is at a dis­ Feelings of Powerlessness in when a child is a passive reactor tinct disadvantage for learning lan­ Mother: A deaf infant with nor­ to an overdirective environment. guage. Her eyes must serve as the mal vision will not have the same Schlesinger found that when sole receptors not only of words, trouble developing early bonds mothers could be helped to feel but of sentences, intonation pat­ with his caregivers as an infant less anxious and more powerful, terns, and emphasis; they must also who is blind because, as we have they helped their children who take over the “antenna-like” func­ seen, the eyes are a main avenue were deaf to be better, more spon­ tion that the ears serve for hearing for these early bonds. Smiles can taneous communicators. people—scanning the environ­ easily be exchanged and body lan­ Language Development in a ment on all sides, picking up indi­ guage can communicate affection Hearing/Speaking Environment: cations of movements that would and connection when a child is Deafness most significantly affects tell of danger or pique interest hearing impaired and has intact communication in the develop­ (Myklebust, 1960). Obviously, the vision. It can happen, though, that ment of language. People need to eyes alone will miss many of these an early diagnosis or suspicion of have language input in order to things. Lipreading, even at its best, deafness may instill in the mother learn language.Without accommo­ is a very inefficient way to receive of a baby who is deaf feelings of dation, a child who is deaf in a powerlessness and/or depression hearing world does not have access that may affect her rapport with to enough language to significantly her child. Hilde Schlessinger, who activate her own innate capacities has done significant longitudinal to develop language.The innate A child who is deaf must be continually studies of children who are deaf capacities for language seem and their caregivers, has found that exposed to language to be most flexible and in a form that is the most typical effect that these active during the early accessible to her. feelings of powerlessness are likely years of life. If a child to have is to cause the mothers to does not receive lan­ become “over-directive” in their guage stimulation when attempts to communicate with young, she is at particu­ their children; that is, their com­ lar risk.A child thus munication with their children deprived may never more resembles a monologue than be able to be fluent a dialogue.They take more turns in any language. than their children, and most of Hearing persons these turns are commands, requests receive most of and directive questions.This over­ their language directiveness may have the effect input through on the infant of causing him to be their ears. Before 32 CHAPTER 2: Understanding Deafblindness

language. Estimates are that an intelligent speech-reader, with good visual access to the speaker’s face, and with good contextual clues, understands with certainty only about 30-40% of the words spoken to her. Given this fact, one can begin to imagine the limita­ tions that a person who is deaf must live with when spoken lan­ guage is her only method of com­ munication. If visual impairment and/or any other impairments are added to the deafness, the com­ municative isolation becomes profound indeed! Consider, too, the fact that much of what hearing people learn in life is “overheard.” (Ears are like antennae, in many ways.) In a household, at school, at a store, in a theater—in all of these places and others, a hearing child overhears hundreds and hundreds of exchanges between adults, between other children, between adults and children. People around him discuss all manner of things, exchange information, struggle aloud with decision making, resolve emotional difficulties, and engage in social amenities.All of this the hearing child absorbs and makes some sense of; some of these exchanges he later uses as models for his own behavior and communicative exchanges.This be far narrower in scope than that of communication, you can envi­ “overheard” experience is a crucial of a hearing child, but, perhaps sion all of the normal social inter­ part of his socialization and an more importantly, his models for actions occurring in a way in important source of his informa­ how to interact socially, how to which the deaf child can access tion about the world. resolve difficulties, and how to them. He can visually “overhear” What about the child who cooperate in decision making will his parents discussing things, for is profoundly deaf in a hearing/ be either severely restricted or example,or struggling with a deci­ speaking environment? The simple nonexistent unless special provi­ sion, or exchanging information. fact is that virtually all of these sions are made. And he can learn a great deal from forms of incidental learning are these exchanges, all of which help unavailable to him.The com­ Language Development in a him engage in similar exchanges muncation he receives is only that Signing Environment: We have himself at a later date.With visual which is directed exclusively been speaking about the deaf child access to language, he becomes toward him, and even that he may in a hearing/speaking environ­ part of a social network in which receive with difficulty.Think for a ment.The same difficulties do not he can participate as an equal minute about what this might exist in the same way for the deaf member. mean in terms of the development child in a signing environment. Research shows that children of his communicative competence. If you can imagine a deaf child who are deaf and have deaf par­ Not only is the information he whose parents and siblings routine­ ents, and who are raised in an possesses about the world likely to ly use sign language as a medium environment where sign language CHAPTER 2: Understanding Deafblindness 33

are deaf and have signing parents disability, or one who is blind, who are deaf also tend to fare may immediately invite creative better socially later on, probably responses to their isolation. Deaf­ because of their increased self- ness is not so obvious; it does not esteem, ease with communication, present itself as being a difficulty and the availability of appropriate in the same way, and so it is likely role models for them. to be ignored.What is more, it Feelings of Isolation: Envisioning demands of us that we learn to these very different scenarios—the communicate in a whole new way. deaf child in a hearing/speaking It presents us with this challenge environment, and the deaf child in of learning to speak with our a signing environment—makes us hands and faces and bodies, as well realize the truth of this statement as with our voices. made by Hilde Schlesinger: Helen Keller, commenting about the comparative effects of Profound childhood deafness is more her deafness and blindness, spoke than a medical diagnosis: it is a cultural of deafness as being the more diffi­ phenomenon in which social, emotional, cult of the disabilities: Opportunities for experiential learning are critical in order for children who are deafblind to learn concepts about the world around them.

linguistic, and intellectual patterns and I am just as deaf as I am blind.The problems are inextricably bound togeth­ problems of deafness are deeper and er. (Schlesinger & Meadow, 1972, p. 1) more complex, if not more important, than those of blindness. Deafness is To think of deafness only as an a much worse misfortune. For it means impediment to learning language the loss of the most vital stimulus— is to think far too narrowly. the sound of the voice that brings lan­ Deafness, especially when it exists guage, sets thoughts astir and keeps us is the primary medium of commu­ largely or wholly within a hear­ nication, do not have trouble in the intellectual company of man. ing/speaking cultural environ­ ...If I could live again I should do learning language in the ways that ment, has much wider and more children who are deaf and have much more than I have for the deaf. profound implications. It isolates nonsigning parents do. In fact, chil­ I have found deafness to be a much to a far greater degree than may dren who are deaf and who are greater handicap than blindness (from be evident at first glance. In fact, as exposed to sign language from a letter to Dr. J. Kerr Love, March 31, a single disability, it is deceptively birth “babble” with their hands 1910, reprinted in the souvenir pro­ invisible.A deaf person may be (experiment with the hand shapes gram commemorating Helen Keller’s used to form the signs of sign lan­ quietly present with a group of visit to Queensland Adult Deaf and guage) at the same age their hear­ hearing/speaking persons, may Dumb Mission in 1948). (Ackerman, ing peers babble with their voices be visually alert and appear to be 1990, pp. 191-2) (or, in some cases, earlier).They functioning normally, and yet may also produce their first recognizable be profoundly isolated. It is a Deafblindness signed words at the same age as challenge for hearing people to What, now, of deafblindness? hearing counterparts produce spo­ understand and empathize with What does it mean to be like ken words.They also make two- the extent and quality of that iso­ Helen Keller, and to be missing and three-word sentences earlier lation, and further, to understand significant amounts of both hear­ than peers who are hearing (Caselli their own complicity in that isola­ ing and vision? It is safe to assume, and Volterra, 1994). Children who tion.A person with a physical at the outset, that deafblindness 34 CHAPTER 2: Understanding Deafblindness

includes all of the difficulties my reach. If I am in a crowded room, cult, although certainly not impos­ of both deafness and blindness. and no one is within three feet of me, sible to achieve. In addition, as we However, when both distance I might as well be in a closet. It is saw in our discussion of blindness, senses are absent, or greatly limit­ very easy for me to misunderstand, so the achievement both of a sense of ed, the difficulties are not simply communication is often very slow. object permanence and of a stable doubled, they create a unique (Robbins, 1983, p.3-3) self-concept or body image is very disability unto itself. hard for the child with blindness; That isolation becomes even with the additional absence of Isolation: Since vision and hear­ more profound if the people hearing, or impairment of hearing, ing are our two distance senses, who are physically near to the the task becomes monumental. the absence of one places a great person who is deafblind are not People who are deafblind, who emphasis on the remaining dis­ equipped—either emotionally or lost one or both of their distance tance sense.A blind person nor­ technically—to communicate with senses after they had already bond­ mally compensates with acute him. Suppose the person who is ed with their mother and attained hearing; a deaf person is often deafblind reaches out to touch, but a stable self-concept, generally fare extraordinarily visually alert and the one whom he touches knows much better than those who must gains access to language, when no sign language, or is frightened be helped through these stages possible, through her eyes. of blindness, or is too pitying to be with only their senses of touch, A person who is deafblind has able to converse? In any of these, taste and smell to compensate.The limited opportunities to compen­ or a number of other imagined baby born both deaf and blind has sate. Increasing emphasis falls upon instances, the person who is deaf- an experience of the world that is the near senses, especially touch, blind may touch with his fingers, so qualitatively different from our and upon whatever remains of but not be able to communicate in own that the bridging of the gap vision and/or hearing.The world any significant way. So, the hurdles between us and this child presents of the person who is deafblind are enormous. a rare challenge. shrinks. For many it does not go Isolation imposed by lack of beyond the reach of the fingertips. vision and hearing presents its Presence of Additional For others it extends only slightly most formidable challenges when Disabilities: Another very signifi­ farther than that. Robert Smithdas, both of these senses are absent cant reason why we cannot think a man who is deafblind, said: from birth. Bonding with the of deafblindness as simply the sum mother or early caregivers forms of deafness and blindness is that For a deafblind person, the world liter­ the basis for all further gains in when a person is missing both ally shrinks in size and scope, and communication.Without vision or hearing and vision, it is highly whatever knowledge is obtained must hearing, such bonding is very diffi­ likely, though not necessarily the come through the secondary senses of taste, touch, and smell, and the exercise Children who are deafblind and have additional disabilities challenge us to of personal curiosity and initiative. develop creative strategies for developing meaningful communication. Consequently, a deafblind person matures more slowly than is considered normally acceptable, and the individual will be prone to greater frustrations in expressing wants and needs. Blindness takes an individual away from things, and deafness takes him away from people…. Deaf- blindness creates unique problems of communication, mobility, and orienta­ tion peculiarly its own. (Robbins, 1983, p.3-3) A person who is deafblind is isolated both from people and from things. Lewis Hoskins, anoth­ er man who is deafblind, described this feeling of isolation like this: I can only talk with one person at a time, and only if that person is within CHAPTER 2: Understanding Deafblindness 35

case, that there will be additional “bad news” or another label! medical and neurological involve­ Thanks to the advances in ment that will affect his or her medical technology, we are now overall developmental growth. able to much more objectively This becomes more true as evaluate children’s vision advances in medicine result in and hearing than we were the saving of lives of children before.This can be achieved born with multiple congeni­ through such tests as Visual tal anomalies and with rare Evoked Potential (VEP), genetic syndromes. In such Auditory Brainstem cases, the challenge to com­ Response (ABR), and ota­ municate with these children coustic emissions. Although is intensified: Caregivers and results of these tests should educators must be able to not be considered definitive, imagine the experience of one they do provide valuable who not only cannot see or pieces of information that hear, but who may be also limited are essential to the total assess­ physically (as, for instance, in cere­ ment process. Functional assess­ bral palsy), mentally (as in brain ments should always be a part of injury of various kinds), medically our ongoing relationships with (as with the infant who has mal­ children. functioning organ systems and Helen Keller Medical assessment is also a requires significant hospitaliza­ very important component of the tions), and/or emotionally (as the diagnosis and assessment process. result of any or all of these other all its own. For now, we need only Many medical treatments exist that difficulties). Only by being able to say that we need to have as clear can result in a dramatic improve­ imagine their experience can we an idea as possible of what a child ment in seeing and hearing.These communicate effectively with these hears and what she sees.This can range from the prescription of children and help them communi­ essential information will enable medication to remove middle ear cate with us. us to imagine with as much accu­ fluid to the surgical treatment of The presence of additional dis­ racy as possible her experience of glaucoma. Because so many chil­ abilities in a child who is deafblind the world, so that we may thereby dren who are deafblind have other creates challenges to our ability to connect with her and help her to multiple disabilities in addition to assess children and to be creative connect with the world around vision and hearing impairments, in developing a system of commu­ her.The importance of these we must take every opportunity to nication that will meet his needs. assessments is often underestimat­ ensure that we are maximizing the Usually, a single, standard method ed, especially when a child with use of every avenue for learning of communication will not meet multiple disabilities is concerned. and preserving whatever residual the needs of children who are Indeed, the use of clinical assess­ senses exist. deafblind and have additional dis­ ment, combined with specialized abilities. Such children challenge functional assessment, is essential Cultural Attitudes us to learn as much as we can in the process of enabling the stu­ Toward Deafblindness dent with deafblindness to join about the avenues through which Communication, as we have said, is families, friends and environment. a child can receive information. a two-way process. Difficulties that The issue of clinical assessment We need to know how well a people who are deafblind experi­ of hearing and vision in many cas­ child can process information and ence in connecting with the world es becomes quite emotional.The how he expresses his thoughts.We lie not only with their own given families of children who have must turn this understanding into limitations, but also in the world, undergone more invasive medical creative strategies for developing or worlds, to which they are trying treatment during the first year of meaningful ways to communicate. to relate. For most hearing and life than most of us will experi­ sighted people, deafblindness is an ence in a lifetime are often reluc­ Importance of Diagnosis unimaginable condition, if only tant to submit their child to yet and Assessment because of their lack of experience another procedure—one that is Our discussion of diagnosis and with people who cannot see or often viewed as unnecessary, also assessment will occupy a chapter hear. It is, moreover, a frightening one that will often result in more 36 CHAPTER 2: Understanding Deafblindness

condition because most of us blind are concerned. Over the depend so much on our vision and REMEMBER THAT world, people of various religions hearing.Trying to imagine being CULTURAL ATTITUDES and ethnic groups have a wide without one or the other can ARE ALWAYS variety of beliefs and attitudes produce anxiety.We may not be concerning blindness and deafness, CHANGING, EVEN IF wholly aware of such anxiety; it ranging from thinking of these may manifest itself subtly.We may SOMETIMES SLOWLY. handicaps as punishments for sins become silent as we pass a blind WE EACH PLAY A in past lives, to viewing them as person on the street or in a hall- PART IN FACILITATING signs of special recognition by way.We may stare curiously and THAT CHANGE. God or gods, to feeling extreme furtively at a group of deaf persons pity or compassion for those who conversing in sign language.We cannot see or hear.We will relate may feel helpless in the presence blind people, deafness is the worst more easily to people who are of someone who can neither see thing that could happen; and for deafblind if we can become aware nor hear. Becoming aware of our deaf people, blindness is equally of our own attitudes. own anxieties may help us over­ frightening” (Robbins, 1983, We might do well, as we exam­ come them, or at any rate will p.3-3).As a result, a person who ine our attitudes, to look not only keep us from becoming victims is deafblind among peers who are at our culture as a whole, but to of our anxieties.We may be able deaf or blind may find herself just look also at the attitudes that are to make contact with a person as isolated as if she were among prevalent in our immediate group who is deafblind, even as we begin sighted and hearing people.This of friends and family. How do to contact our own fears of isola­ isolation, particularly among people our friends feel about disabilities? tion, or perhaps because we have who are blind, may be due not Will I be ridiculed, or admired, or contacted these fears and can only to fears of deafblindness, but ignored if I choose to relate equal­ therefore empathize. also to the simple fact that a com­ ly to a person who is deafblind? These fears regarding deaf- mon language mode is absent.A If I bring home a friend who is blindness appear not only among person who is deafblind who deafblind, what will be my family’s sighted and hearing people; they depends upon manual communi­ reaction? How do I know? How appear also, and often more cation will not be able to under­ am I influenced, even subtly, by intensely, among the very groups stand the speech of a blind person, the anticipation or imagination one might expect would be most and vice-versa. of such reactions? welcoming to people who are Many other overt and subtle And, finally, we will also do deafblind—sighted deaf people cultural attitudes may come into well to remember that cultural and hearing blind people.As play where people who are deaf- attitudes, including our own, are Robert Smithdas says,“For most always changing, even if sometimes slowly.We each play a part, through As society as a whole becomes more receptive to those who cannot see or hear, we will all learn more about one another’s unique experience of the world. our actions and speech, in facilitat­ ing that change. Our own openness to persons with deafblindness, in small or large ways, will help influ­ ence society as a whole to be more receptive to those who cannot see or hear, and will thereby help them become less isolated.This openness will also help us all learn more about each others’ unique experi­ ence of the world. This chapter has presented an overview of the unique disability of deafblindness.Although those who have this disability are each very different, each is also linked in innumerable ways to the others; each has, to some extent, experi­ enced overwhelming isolation. CHAPTER 2: Understanding Deafblindness 37

REFERENCES Ackerman, D. (1990). A natural history of the senses. Myklebust, H. (1960). Psychology of deafness: Sensory New York, NY: Random House. deprivation, learning, and adjustment. New York, NY: Grune and Stratton. Caselli, M.C., & Volterra,V. (1994). From communi­ cation to language in hearing and deaf children. Riggio, M. (1992).A changing population of chil­ Volterra,V. & Erting, C.J. (Eds.). From gesture to dren and youth with deafblindness:A changing role language in hearing and deaf children. (pp. 263-277). of the deaf-blind specialist/teacher (Reaction Washington, DC: Gallaudet University Press. Paper). Hilton/Perkins Program (Ed.). Proceedings of the national conference on deaf-blindness: Deaf-blind Fraiberg, S. (1977). Insights from the blind. New York, services in the 90s (pp.20-26).Watertown, MA: NY: Basic Books. Perkins School for the Blind. Individuals with Disabilities Education Act of 1990 Schlesinger, H.S., & Meadow, K.P. (1972). Sound and (IDEA), PL101-476. (October 30, 1990).Title 20, sign: Childhood deafness and mental health. Berkeley, USC 1400 et seq.: U.S. Statutes at Large, 104, 1103­ CA: University of California Press. 1151. Smith, A.J., & Cote, K.S. (1982). Look at me:A Lusseyran, J. (1987). And there was light. New York, resource manual for the development of residual vision NY: Parabola Books. in multiply impaired children. Philadelphia, PA: Pennsylvania College of Optometry Press.

ADDITIONAL READINGS AND RESOURCES Davidson, I., & Simmons, J.N. (Eds.). (1992). The Reiman. J.W., & Johnson, P.A. (Eds.). (1992). early development of blind children:A book of readings. Proceedings of the national symposium on children and Ontario, Canada:The Ontario Institute for Studies youth who are deaf-blind. Monmouth, OR:Western in Education. Oregon State College,Teaching Research Division. Edwards, L., Goehl, K., & Gordon, L. (1994). Robbins, N. (Ed.). (1983). Deaf-blind education: Profiles: Individuals with deaf-blindness. Terre Haute, Developing individually appropriate communication and IN: Indiana Deaf-Blind Services Project. language environments. Watertown, MA: Perkins School for the Blind. Freeman, P. (1985). The deaf-blind baby:A programme of care. London, England:William Heinemann Sauerburger, D. (1993). Independence without sight or Medical Books. sound: Suggestions for practitioners working with deaf- blind adults. New York, NY:American Foundation Huebner, K.M., Prickett, J.G.,Welch,T.R., & for the Blind. Joffee,E. (Eds.). (1995). Hand in hand: Essentials of communication and orientation and mobility for Smithdas, R. (Ed.). (1995). Outstanding deaf-blind your students who are deaf-blind. New York, NY: persons. New York, NY: Helen Keller National AFB Press. Center for Deaf-Blind Youths and Adults. McInnes, J.M., & Treffry, J.A. (1984). Deaf-blind Simmons, J.N., & Davidson, I. (1992). Determinants infants and children:A developmental guide. Toronto, of development: Conceptualizing young blind children. Canada: University of Toronto Press. Toronto, Canada: Canadian Council of the Blind. Miles, B. (1995). Overview on deaf-blindness. Within Reach: Getting to know people who are Monmouth, OR:Western Oregon University, deaf/blind []Video . (1987).Available from Western Teaching Research Division, DB-LINK. Oregon State College,Teaching Research Division, Monmouth, Oregon.