Future Reflections Winter/Spring 1997, Vol. 16 No. 1
by Carol Castellano
Reprinted from the February, 1997, issue of the Braille Monitor, the monthly publication of the National Federation of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230.
Barbara Pierce, Editor, Braille Monitor: Early last year I began hearing and reading about a new book intended to provide a wonderful new resource to parents of young blind children. The reviews I read, all of which were written by professionals in the blindness field, were flattering and enthusiastic. Those invited to contribute chapters to the text were knowledgeable and well respected, and several parents had been asked to add their perspective.
As I say, the reviews were positive, but the quotations included gave me qualms. When I received a review copy of the book, I passed it along to Carol Castellano, an experienced and successful parent of a blind daughter and a leader in the National Organization of Parents of Blind Children, a division of the National Federation of the Blind. I was interested to see how a parent of a healthy, happy blind child would react to all the so-called honest talk about what it is really like to deal with a son's or daughter's blindness.
Carol called me when she finished reading the book and asked how much space she had to write her review. I responded that this was clearly an important book, and good or bad, Federationists were going to be running into questions about it and dealing with its impact for years to come. I told her to report honestly on what she had found and dispense praise and criticism where she thought they were due. The following article is the result. Doubtless many parents of young blind children will read Children with Visual Impairments, so we had all better be prepared to help them put it into perspective. Here is Carol Castellano's attempt to do just that:
Children with Visual Impairments: A Parent's Guide, a new book edited by M. Cay Holbrook and published by Woodbine House, is intended to give parents of visually impaired babies and very young children information and guidance on issues related to visual impairment. Written by sixteen professionals in the blindness field and three parents, the book contains much information, promising chapter titles (each chapter is written by a different author or authors), and a number of suggestions for working with a visually impaired child. The question must be asked, however, on the whole, will this book help or harm blind children and their families?
In my role as President of Parents of Blind Children of New Jersey, I speak frequently to parents of newly diagnosed blind children. My experience with these parents is that they are seeking information, suggestions, and a listening ear; but above all, they are seeking hope. Often the only hope they have early on is that their child will have a little eyesight. What they know about blindness--or what they think they know-- is pretty bleak. They usually know nothing at all about blindness skills.
I gently tell them about my daughter--that she attends our neighborhood school and that she has the same books as all her classmates, but in Braille. I mention that she's a sports nut and played on our town's T-ball team. I tell them that she has a cane and uses it to go all over. I might mention that her grade is working on research skills at the library or that this morning she went to a rehearsal of her class play.
The parents' attention is definitely engaged. "Your daughter is blind?" they ask me. "Totally blind," I reply. Hearing that a totally blind child somehow manages to accomplish all these normal tasks gives the parents heart. It also opens the door to a discussion of blindness skills, the key, of course, to a blind person's managing such tasks. Suddenly the parents on the other end of the phone see a vision of a normal life and get a glimpse of how this life might be achieved.
Many times the conversation goes on to how parents might enhance a blind baby's development; sometimes we brainstorm to resolve a specific problem the family is experiencing. Usually I advise those parents to eat their Wheaties because they'll need their strength. I tell them I'll send them some literature to read. I invite them to one of our Parents of Blind Children gatherings to meet other families and some blind adults. I let them know that they're doing the smart thing by reaching out and gathering information and that their child is lucky to have them. The closing words from the parents are almost always: "Thanks. You've made me feel so much better."
Parents feel better because they begin to see the possibility of a bright future for their child; they begin to believe they'll be able to manage what needs to be done; they realize others have gone successfully down the road that is before them. Feeling better enables parents to start down that parenting road with a belief that will support them during both the easy times and the challenging times: that blindness need not stop their child from leading a fulfilling, normal life.
Contrast this with the approach found in Children with Visual Impairments. First of all, in the book blindness is labeled a "misfortune" and parents are told that they "may feel as if they must have done something to be singled out for this bad fortune." Janice Herring, author of this chapter, "Adjusting to Your Child's Visual Impairment," comforts parents with the statement, "You know you would never have deliberately done anything that you could have foreseen would result in your child being born with a visual impairment." So much for the possibility that it might be okay to be blind.
The authors made a decision to use the term "visual impairment" instead of the word "blindness." Much is made in the early part of the book about the fact that most visually impaired children have "some useable vision" and that very few children are actually blind--meaning totally blind in their nomenclature. (In the book's glossary under the entry "blindness," it reads "See total blindness.") I suppose parents are meant to be comforted by the idea that their child is probably not blind. The authors tell us, "Even children who are considered blind often have some visual perception of light and dark that will assist them as they learn about the world," and "rarely do we assume that a child has absolutely no vision unless his eyes have been removed. . . . If the child has some level of visual ability, it may be used for important tasks such as orientation and mobility and daily living skills." No mention is made of the fact that children with no vision at all manage orientation and mobility and daily living skills by using the skills of blindness. What are the messages here? That first of all, chances are your child is not blind; second, your child needs vision to accomplish the tasks of life (Lord help those poor totally blind kids!). Parents are told to rearrange the environment and to encourage the child to use that vision. Since the skills of blindness are not mentioned, there is no hope if the child has no eyesight to use for tasks.
The emphasis on eyesight over blindness skills has tragic implications, as shown in the following story, from the chapter "Adjusting to Your Child's Visual Impairment." The parent-author, Janice Herring, tells of taking her children to the zoo and feeling depressed about all that her severely visually impaired son would miss. Her sadness changes to pleasure and pride, however, when he enjoys looking at the animals he could see and shows "his commitment to peering into every cage--even those where I know he saw nothing." What are the implications for the future for a child who so early learns that to elicit pride and pleasure in one's parents, one needs to pretend to see?
The fundamental idea that it is awful to be blind underlies most of this book and is the assumption from which most of the ideas and suggestions flow. Few would deny that parents need to adjust to the idea that their child is blind, but does the dreadful picture drawn by this book of the visually impaired child and his or her effect upon family life help with this adjustment? Consider the following premises, all taken from the book:
"There are a multitude of reasons you may feel intimidated or inadequate at the prospect of raising a child who can't see. It would be impossible to list them all...."
Parents "may spend every waking moment thinking or talking about their child's visual impairment...just trying to fathom all the ways that their child's life will be different than expected... Then they begin agonizing over a new concern: how will this disability affect my family? Will her special needs consume all our time and energy until we have no time for our own interests? Will she be more of a burden than a friend to our other children? Is there any hope that we can still have a 'normal' family life?" (Incidentally, the author does not answer "yes" to that last question.)
"Like many parents, you might eventually want to seek counseling for the chronic grief that can go with having a child with a disability."
The story "Welcome to Holland" is printed, which relates how your trip to Italy was diverted and you land instead in Holland, where "you must stay." After the story, the chapter authors write, "But you, the parent, aren't the only one living in Holland. Your child will spend his entire life there, while other children take off for Italy and other flashier destinations."
Another author states, "In fact, it is not unusual to wish that your child would just go away."
Resentment is called "a perfectly natural reaction to having a child with a visual impairment." The overall portrait of the visually impaired child is a rather frightening one. In it we see a child who will have trouble eating, sleeping, toileting, communicating, moving, and even cuddling. His "learning will be limited" and he will "almost invariably" lag behind sighted children. This child will read at a slower rate and might need to spend more years in school. She will have fear of the unknown, fear of open spaces, and will "be terrorized by a blood pressure cuff." This child will be unable "to observe and imitate" and unable to "see similarities and differences among objects in the environment." This child will grow up into an adult who might be able to work or live on his own. The words of one parent/author capture the feeling the reader is bound to be left with: "We still don't know all the things Casey won't be able to do."
I can't help thinking that new parents being bombarded with messages like these might find it a bit difficult to develop a positive attitude toward blindness. They might even begin to feel a bit depressed. (In fact, I strongly suspect that a few of the authors of this book are depressed!)
Many times in the book, the choice of words, along with the underlying attitude, conveys the negativity. "You will disable your child more in the eyes of others if you treat her as if she is more helpless than she is," and "many children with visual impairments begin receiving educational support in infancy to help them learn to cope with our visually oriented world." These ideas can so easily be expressed in a positive manner, one that is respectful of blind children and of the skills of blindness that they will be learning.
Much ado is made in this book of the impact a visually impaired child will have on every aspect of family life. The litany of potential horrors could wear down even the most doggedly optimistic of parents. Here are a few of the lowlights: Your friends might leave you; your marriage might fail; you might go bankrupt ("meeting the everyday and special needs of children with visual impairments is expensive...the loss of income for missed days of work and health insurance co-payments and deductibles...the list of potential expenses goes on and on"); in fact, having this visually impaired child might be so expensive that "your other children may have to wear hand-me-downs or forgo music lessons or Little League"; you might be so frazzled at day's end that "you have no energy left for socializing or even for asking your kids how their day went"; you'll have "many sleepless and tear-filled nights"; everyday tasks such as breastfeeding and diapering your visually impaired baby become events for which you must find means not to "frighten, harm, or humiliate" your child; if you need a break, maybe you'll be able to find a sitter "willing to try" and you will realize somewhere down the line that, even though you might think your child looks like a normal child, others do not.
If your shoulders are not already sagging under this burden, take a look at how the authors say your other children will be affected: they might experience responses to their sibling's disability "ranging from anger and resentment to anxiety and grief," feelings which, the authors assure us, are "perfectly normal and nothing to be ashamed of." I can't help wondering, might there be any other range of emotions with which siblings might greet a new member of the family? Might there be love? joy? neutrality? acceptance? pleasure? Not according to this book. (My son's speech to NFB of New Jersey's state convention when he was seven years old comes to mind. "As a brother of a blind child, I think it's fun to have a sister who is blind! We play lots of games together. It's really pretty regular to have a blind sister. Come on--she's only a kid!" And "Because my sister is blind, I have gotten to know lots of friendly people--her Braille and cane teachers and all the people in the NFB.")
Ruth and Craig Bolinger, authors of the chapter entitled "Family Life," go on to list the "typical emotions" of siblings--anger, resentment, anxiety, grief, guilt, frustration, upset, scared, poke fun, make fun, embarrass, lash out, target, and disgust. There is no suggestion whatsoever that sibling relationships might be loving and normal. (Ironically, these same authors counsel that children are not born with responses and opinions and that "when the time comes to teach siblings about your child's visual impairment, you can give them the attitudes, opinions, and responses you want them to have." I'll say!) Even if you think your other children are coping well, the book warns, be on the lookout for unexplained illness, poor schoolwork, nightmares, and loss of interest in play. But fear not, your normal children can attend a sibling support group, where they can discuss "why they feel the way they do": and talk about "subjects that make all kids uncomfortable."
No wonder the authors feel you might want to get rid of this child! Do these potential pitfalls exist? I suppose they do. But since the possibility that a family might actually live through the experience of having a visually impaired child successfully is never suggested, parents reading this book might well conclude that these negative experiences are likely.
The assumption that blindness is awful surfaces in various sections of the book. In the self-esteem chapter, for example, the authors (Dean W. Tuttle and Naomi R. Tuttle) tell us that "problems and crises stemming from impaired vision" will cause the child to struggle through trauma, shock, denial, unreality, mourning, withdrawal, succumbing, and depression, before arriving at self-acceptance and self-esteem (the reader needs a high tolerance for psycho-jargon). A warning is also issued against comparing your child's achievements to those of sighted peers and against setting "unrealistic" goals. These authors did, however, write the warmest lines in the book. In regard to praising a child, they write, "A child is never too young to understand that he is a source of joy to Mom and Dad."
In the chapter called ""Your Child's Development," Kay Alicyn Ferrell offers clear, useful explanations of the various developmental areas but has as her central thesis that, although not much is known about the development of visually impaired children, what is known is that their development is very different from that of sighted children and much more difficult. "When a sense such as vision fails to develop properly," the author writes, "a child's entire course of development can be altered." Parents can take cold comfort from her statement that "comparisons to normal development are not really relevant for children with visual impairments. In other words, what is considered a delay for other children may not be a delay for your child--it may, in fact, be normal."
The explanation for this "normal delay" is, of course, that the child is lacking vision. "It would be nice if the other senses could substitute for vision--if they could provide the same type of information that helps babies to learn and form concepts about their world and if they could do so as frequently as does vision. Unfortunately, they do not." Parents are told that without eyesight their child will have "no memory of what objects feel like," that life will appear as a "jumble of isolated experiences," that parts of their child's concept development will be like "putting a puzzle together without seeing the photograph on the box," and that their child "has no way of knowing what that meow, growl, or purr is." (More than a little sighted bias is evident in some of these statements.)
Parents are informed that vision is involved in 90 percent of early learning, "but the way your child learns about the world is going to be different. To a greater or lesser degree, your child will have to rely instead on her senses of smell, touch, hearing, and taste for information. As mentioned above, this will make it harder for your child to learn because she cannot watch and imitate...and may make her less motivated to learn." In addition, we learn that "moving independently from place to place seems to be one of the most difficult skills for children with visual impairment" (would that be with or without a cane? I wonder), that "children with visual impairments typically have trouble with certain aspects of communication," that they are likely to be reluctant to explore their environment, and that even attaching to their parents seems to be harder for visually impaired babies because they "send different signals," and "they often do not seem to cuddle like other babies."
No one would deny that eyesight contributes a great deal to the development of sighted babies, but what is the point of bludgeoning parents of visually impaired children with the idea that their child, because of the lack of this particular sense, will have difficulty in virtually every area of development? What is the point of this reverence for eyesight when writing for parents of visually impaired children? Where does this leave the parent? Will it help parents develop a genuine respect for the alternative ways their child will use to learn about the world? What is to be made of the author's seeming determination to convince parents of the differences and difficulties their children will encounter in every area? Wouldn't it have been much more useful--not to mention uplifting--simply to explain to parents in a positive manner how visually impaired babies do learn about the world (as we indeed know that they do) and attempt to engender a respect on the part of the parent for the alternative methods the baby will be using to learn about the world?
After reading this chapter, parents may well conclude that their baby will never grow up satisfactorily. Ferrell assures us that all this "does not mean that learning is impossible," but a parent hearing her message may just conclude that it is. Glaringly missing from this discussion of development is any mention of alternative skills. Instead, I am afraid parents will be left with the sinking feeling that all is lost because their child lacks the one necessary sense. Yet this author is the same enlightened Professor Kay Ferrell who courageously argued in the pages of the September/October, 1996, issue of The Journal of Visual Impairment and Blindness that the time has come to end vision-stimulation programs because they aren't helping children with low vision.
The chapter's suggestions for ways in which parents can foster their child's development are generally useful ones, but even they contain that negative impulse: "Use touch. Your touch means a lot to your child. Sometimes a touch on the shoulder can be just the reassurance your child needs to plod ahead!" and "Try closing your eyes before you try to hold and drink from a cup...to get an idea of what you are asking your child to do...It might not be as easy as it seems!" A few words about blindness skills and the fact that blind people do such tasks every day would have been welcome.
Many good suggestions are offered in the chapter called "Daily Life" and the author, Beth Langley, does refer to adaptive skills, although the reader must wade through a lot of negative language to get to them. For example, the author writes, "Toilet-training is another area of difficulty for children with visual impairments," but then she goes on to suggest the normal training activities. In her conclusion she states that "when a child has a visual impairment, helping him achieve independence may not only be more challenging but emotionally draining for both you and your child." She goes on to say that: "You will likely have to make small adjustments in attitude and in your child's environment. With planning, consistency, and creativity, however, you cannot only foster independence but also self-esteem, acceptance, and competence in all aspects of your child's life." I think this author is on the fence. She seems to believe that blind children can make it ("The key is to encourage independence and competence in everything you do or say"), but she seems to be just learning how to write about blindness using positive words.
The chapter called "Children with Multiple and Visual Disabilities" by Jane Erin gives an overview of conditions that often occur with visual impairment. Although parents may find the medical section of this chapter scary (toxoplasmosis is a parasite "which can invade the brain and eyes"), in general the chapter offers positive suggestions for helping a multiply disabled child learn to move, act on the world, interact with others, and learn language.
The basic premise of the "Orientation and Mobility" chapter by the late Everett W. Hill and Mary-Maureen Snook-Hill is that "orientation and mobility training promotes safe, efficient, graceful, and independent movement through any environment, indoor and outdoor, familiar and unfamiliar." The authors also advocate early training in O&M and offer a discussion of "foundation skills" that is quite useful despite a bit of jargon. The discussion of formal mobility skills' leading to eventual independent travel, however, is the standard fare, beginning with "self-protective techniques" and giving much weight to the sighted guide.
The authors take a position of apparent neutrality regarding the various "mobility systems"--sighted guide, the long cane, alternative mobility devices, dog guides, and electronic travel aids--and this is problematic. I suppose their intent is to offer objective information, but the fact is that the different systems are not equal because they do not lead to the same level of independent movement. The authors do not discuss the systems in terms of this ultimate test (independent movement), but I think it is the one that would matter most to parents. But parents new to blindness may not yet be able to make this analysis, especially when presented with what appears to be such objective, neutral information.
For example, the authors explain each system and then list advantages and disadvantages to each. Under sighted guide they list as an advantage that "it provides maximum safety to the child during movement." What message does this give the parent? That the child will not be safe if moving alone! The authors also mention that "sighted guide provides companionship as well as information about the surrounding environment." The mention of companionship feeds fears and stereotypes about the poor blind person who must rely on the kindness of strangers for companionship. The second half of the quotation, concerning environmental information, may lead parents to conclude that the only way a blind person can have any idea of where he is is if a sighted person is there to tell him.
Some bias, or at least preference, is revealed in the Alternative Mobility Device section. These devices are described as easier to use conceptually and motorically and requiring less instruction than canes, but do they provide the same result? The authors do not mention that these devices require the use of two hands, thus making it impossible for the child to carry something or to hold hands with the parent (see below). In addition they are heavier than canes and simply do not allow as much freedom of movement. They are discussed, however, as if they are an equivalent alternative to a cane. The authors' bias toward these devices is revealed in another section of the chapter, where they casually mention that "a child in a kindergarten classroom may need formal O&M instruction to learn basic sighted guide skills, self-protection skills such as trailing, or the use of an alternative mobility device to travel with his classmates from his classroom to the cafeteria and the playground." Again, what message will the parent hear? That in order to move with his classmates, the child must use one of these devices and not a cane.
The authors define a mobility system as "a guide or device that permits independent movement through the environment." I suspect, however, that they are not using the word "independent" as most parents would understand it or as the dictionary defines it. Many in the O&M profession seem to have convinced themselves that using the sighted guide mobility system gives a blind traveler the same independence as using a cane. The authors list as a disadvantage of the sighted guide system that "independence is limited" but they mean "because a guide might not always be available."
The chapter exhibits the usual love affair with sighted guide that I have seen so often in professional literature. Three pages are devoted to a discussion of the various techniques of sighted guide, along with three photographs which illustrate them. (In one photograph the child is holding a cane, but it is close to his body and high off the ground. No canes are shown in the other photos.) In contrast, only two pages are given over to the cane, and the only photo shows a straight and a folding cane lying on a carpet and not in use! (A cane appears in one other photo in the chapter, one that is illustrating "upper hand and forearm protective technique.")
In addition, the authors hold dearly to the idea of how actively the blind person participates when using the sighted guide technique. Their insistence on this, coupled with my own observations of how children behave, leads me to suspect that they protest too much! I also suspect they haven't ever lived with a blind child. Too many of us parents have had the experience of our children being taught this system and then being only too content to "leave the driving" to someone else!
The authors also claim that a preschooler "needs to learn sighted guide skills so that he can travel comfortably in unfamiliar and outdoor settings with you." A statement like this serves only to mystify the idea of a blind child's movement, rather than to simplify it. Those of us who take a common sense approach to raising our blind children know that you don't need a "system" composed of complicated, rigid techniques that must be taught by a highly trained professional simply to take a child out for a walk!
The emphasis on technique strikes me as overdone. The discussion of cane technique, for example, is quite rigid and supports (perhaps unintentionally) the position of some cane instructors that very young children should not be given canes because they cannot yet perform the techniques correctly. The emphasis given to technique, in fact, becomes almost reverential in two parts of this chapter. First parents are advised not to hold hands with their child. ("Whenever possible, you should encourage your child to use the proper grip.") I feel sorry for parents who might be inclined to follow this advice, for they might never experience the pure, normal pleasure of holding hands with their small child! Incidentally, the proper grip entails "grasping the guide's wrist, positioning the thumb to the outside and the four fingers to the inside of the guide's wrist. The grip should be secure, but comfortable for the guide. The child holds his upper arm parallel and close to the side of his body, forming approximately a 90-degree angle with his lower arm so that he is positioned approximately one-half step behind the guide." I cannot help thinking that this, along with the detailed instructions about "narrow passageway technique" and "stairway technique," are much ado about very little!
Later, in a section called "Modifying Your Home," the authors explain that some consistency in the home environment will allow the child to become familiar with the spatial arrangement and to develop confidence in his mobility. It is then suggested--incredibly, I think--that after the child learns where all the furniture is, parents should move it around! "Move the toy chest to a different corner of the room so your child has to use his self-protective techniques to travel the new route." The question must be asked, who or what is being served here, the child and his independent mobility or the system and its techniques? Does any person need this kind of outer-imposed stress in his or her own home?
Other problems exist in the "Modifying Your Home" section. Since the authors' premise is that "how your home is arranged can greatly affect the development of O&M skills," parents may get the idea that they will constantly be rearranging the furniture in order for their child to move about the house. First it is suggested that "you could initially arrange the furniture along the wall so that he could travel along the furniture without having to move out into open space" (heaven forbid!), and then parents are told, "As your child becomes more motivated and proficient, you could rearrange the furniture and provide landmarks. For example, when your child contacts the coffee table, instead of continuing in the same direction along the wall, he would turn left, trail the edge of the coffee table to the end, continue across two feet of open space to the big chair, walk around the chair to the wall, and turn the corner into the kitchen." This makes getting across a room seem impossible! If this were not bad enough, parents are then told, "As your child becomes still more proficient, you can challenge him to continue to use his O&M skills by creating a more complex environment. That is, increase or decrease the amount of furniture or rearrange it." Again, if any of these professionals ever actually lived with a blind child, they would quickly see that these ideas are not only impractical, but present unnecessary obstacles to the goals of confidence and independent mobility.
I have saved the best for last. In contrast to the 226 pages that precede it, the "Growing into Literacy" chapter is downright cheerful! In a noticeably different and refreshing tone, the author of this chapter, Alan J. Koenig, writes about visually impaired children as if they were on a par with sighted children! He makes laying the foundation for literacy seem not only possible, but simple and fun. The author points out how the early experiences a visually impaired child needs are the same ones that sighted children need, with simple adaptations made for blindness. Parents will be empowered by this information; it will help them to feel competent, knowledgeable, in control of the situation, and on the right track.
Bias toward eyesight is evident in many chapters of this book, but not in this one. With much common sense the author writes, "If your child has vision, visual information should be paired with other types of sensory information. . . . Visual information should not be the only source of information. Again, the more senses that can be used to learn things, the better."
The author is clearly a Braille enthusiast who pleasantly addresses the usual criticisms of Braille, includes a reference to the "handy slate and stylus," points out that audio tapes and technology do not replace literacy, and several times suggests making contact with a blind adult!
In conclusion, too much of this book expresses a negative attitude toward blindness; parents will be left with little hope. Too many qualifications are placed on the child's chances for success (the phrase "as independent as possible" is used repeatedly); there are far too few references to the skills of blindness. The absolute distinction made between visual impairment and blindness will keep many children from learning blindness skills that would enable them to function more efficiently, thus vastly reducing the "frustrations" and "problems stemming from visual impairment" to which the authors so frequently refer. Many references are made to turning to others for help--friends, relatives, doctors, counselors, and especially "vision professionals." Surprisingly little emphasis is given to finding other parents of visually impaired children. One author mentions consumer groups, and one author actually suggests seeking out a blind person.
Each chapter ends with parent comments. I do not understand why the book's editor chose to include them, since they are, for the most part, very negative and quite sad. I suppose their inclusion flows from the book's basic premise, that blindness is absolutely awful. I know from the professional literature that there is a (large) school of thought that parents who do not dwell on how handicapped their children are and who instead decide to pick themselves up and just move forward, are in denial. I am also reminded of a certain style of parent support group, in which success seems to be measured by how many people are crying by meeting's end.
Mention is made a few times in the book of the idea that "your child is a person first and only secondarily a person who happens to have a visual impairment" and "visual impairment is only one of your child's characteristics" and "we must be diligent in our insistence that there is no shame attributed to the word 'blind.'" Still, these end up being only lip service. The book speaks for itself in its studious avoidance of the B-word and its clear message that every aspect of your child's life and your family's life will be negatively affected by visual impairment. Parents new to blindness are not likely to have any defense against this sort of negative view, and more experienced parents will not need the basic information this book provides.