Future Reflections Special Issue on Low Vision FEATURE
by Carol Castellano
Reprinted, with updated material, from Future Reflections, Volume 29, Number 1, Winter 2010
From the Editor: Carol Castellano serves as director of programs for the National Organization of Parents of Blind Children (NOPBC) and is president emerita of Parents of Blind Children-New Jersey (POBC-NJ). She is the author of four books on the education of blind and low vision children, including Making It Work and Getting Ready for College Begins in Third Grade. This article is an updated version of a presentation Carol delivered at the national convention of the National Federation of the Blind (NFB) in 2009.
A four-year-old boy has entered preschool. He is highly sensitive to light and glare. His 20/400 vision makes it difficult for him to distinguish what is on the printed page in front of him. If he wears his sunglasses so that he can tolerate the indoor light, he can no longer see the page. At an IEP meeting the school principal demands to know exactly how many lightbulbs she must remove from the ceiling fixture in order to accommodate the boy's sensitivity to light. "If it gets too dark in the classroom," she warns the boy's mother, "we'll be out of compliance with state regulations for the rest of the children."
When this little boy walks from place to place within the school, an aide provides a constant flow of verbal information. "Be careful, there's a desk in the hallway ... slow down, the janitor's bucket is in our way ... watch out, here come the stairs." When he steps outside for recess, the boy is blinded by the daylight. The aide holds his hand so that he does not fall off a curb or trip over a tree root.
There is no Braille and no cane in this child's life because ... he is not blind.
A girl sits in a fourth grade classroom, an aide by her side. The aide retrieves the child's books, reads to her from books and from the computer screen, accompanies her in the hallways, and eats lunch with her in the school cafeteria. "Why does the aide walk with her and read to her?" I ask. The mom explains, "Well, those things are very visual."
There is no Braille and no cane in this child's life because ... she is not blind.
A fourteen-year-old high school freshman is having difficulty navigating the hallways and stairwells of his new school. Someone has suggested placing bright yellow tape at the top of each stairway. Another person recommends hiring a full-time aide to keep the boy safe and also to take notes for him, as he cannot see the board and cannot really read his own handwriting. The deliberations of the school team and parents are slow and cautious--especially in view of the nervous breakdown the boy had at the beginning of the school year and his subsequent hospitalization for anxiety and depression.
There is no Braille and no cane in this boy's life because ... well, you know, he is not blind.
A young man of twenty-four sits at home, angry and depressed. Unable to complete college and not working, he has no goals and doesn't believe he can accomplish anything in life. When I mention the possibility of training at an adjustment to blindness center, his mom immediately stops me. "Oh, no, he doesn't need that. He hasn't ever spent time with that kind of person. He doesn't think of himself as ... visually impaired."
These stories are not fictions--only identifying details were changed. When the parents of these children called, they each wanted me to understand that their child was not blind!
Frank is a second grader with albinism. He uses the vision he has very well, but his mother recognized that it might not work for him later, when the print becomes smaller and the paragraphs more dense. When his mother suggested at a school meeting that Frank learn Braille, the teacher of the blind responded, "Oh, I'd hate to do that to him." She went on to explain to the school staff that Braille is not a quick thing to learn, that poor Frank would have to learn all different grades of Braille and then would have to learn another code for math and even another system for music!
When it came time to discuss mobility, Frank's mother related how Frank tripped over small rises in the terrain, used his foot as a feeler in unfamiliar places, and had run headlong into a glass sliding door at his aunt's house. The mom thought Frank should learn to travel with a cane. The O&M instructor explained that Frank didn't qualify for cane use and, what's more, he needed to trip over things so that he would learn to pay more attention.
At the end of the meeting, the director of special services contributed what she seemed to feel was an expert opinion--though they'd never had a visually impaired student in their school district before. She'd done her research, she told us, contacting directors in other school districts. "Nobody," she proclaimed, "is giving Braille to kids who can see." "And," she continued, "I found out Frank would read the Braille with his eyes anyway. They'd have to blindfold him to get him to read it with his fingers. I just can't get that image out of my mind," she cried, "that poor little boy sitting at a table blindfolded." Then, turning coldly to the mother, she hissed, "I just don't understand why you would want to make that child blind."
Within that statement lies the crux of the resistance to providing training in nonvisual skills to children with partial sight--the deep and pervasive negative emotional reaction to the idea of blindness. Contrary to the sentiment expressed in a favorite slogan of ours in the NFB--that it's okay to be blind--to most of the general public, to be blind is very bad indeed. Current research continues to find that people fear going blind even more than they fear their own death.
So I guess it's natural--or at least predictable--that when parents hear from the professionals that their child is not blind, they feel relieved. "Thank goodness she's got that little bit of vision," the doctors say. "You're lucky," the teacher tells them. "She won't have to learn Braille." "He's got a lot of travel vision," the mobility instructor adds. "He won't need a cane." The child is encouraged to use her remaining vision and is rewarded by making Mom and Dad, the doctors and teachers happy when she is able to see.
In a handbook written for parents of children with visual impairments, one mother tells a story about taking her children to the zoo. She watches her sighted daughter enjoying the animals and is saddened by the fact that her visually impaired son has to be led from cage to cage and can only see the animals that are at the front of their enclosures. But her negative feelings subside and she begins to feel proud of her son, she relates, when he shows "his commitment to peering into every cage--even those where I know he saw nothing."
What is the message we give a child when he makes Mom happy and proud by pretending to see? In this view, the use of vision--even if it is just a pretend use--makes the child normal and acceptable, someone worthy of pride. It follows, then, that not being able to use vision is abnormal, unacceptable, and grounds for pity rather than pride. It is the act of seeing, not the act of gaining the information sought, that is valued. Pretending to see keeps the child out of that cheerless, piteous, and heartrending category of blindness. Anyone who would want to put a child into that category--like Frank's mom at the IEP meeting--is suspect, perhaps emotionally unsound.
No nonvisual skills are offered as an antidote to the inability to see. In fact, the use of nonvisual skills for these children--associated as they are with blindness--is absurd, appalling, not even to be considered. If the possibility is brought up, it is met with a chilling response. When one mom asked for Braille for her young partially sighted child, the teacher protested, "You're selling him short. You need to give him a chance." Another begged, "Please, don't give up on him yet." The very skills that can enable the child to function, that can set the child free, are conflated in the minds of many with giving up and submitting to failure.
Another component of the resistance to teaching nonvisual skills to partially sighted people is the school of thought that the needs of the visually impaired truly are different from those of the blind. One proponent of this thinking is Sam Genensky, the Harvard and Brown University-trained mathematician who invented the closed circuit TV (CCTV) in the late 1960s. Too frequently, says Dr. Genensky, the visually impaired are given the same services as the fully blind, preventing them from making good use of the sight they have remaining. Why offer the visually impaired only Braille, he says, when many of them could read a book with large enough type? It appears that we can safely conclude that intelligent people of good will fall on both sides of this debate.
A third factor in the resistance to providing training in nonvisual skills is the way in which our teachers of the blind are trained. The approach seems to have grown out of both the idea that visually impaired people really do have different needs and the negative emotional reaction to blindness. A current textbook, Foundations of Low Vision: Clinical and Functional Perspectives, by Anne L. Corn (American Foundation for the Blind, 1996, reprinted 2007), includes the Bill of Rights for Persons with Low Vision. Number Four in the Bill is the right "to develop an identity as ... a sighted person who has low vision." The authors state that "the person for whom the use of vision is not preferred, not desirable, or too stressful must be respected for this choice," and adds, "If a person ... feels more comfortable functioning as a person who is blind, that choice should be respected." Is there really such a sharp distinction between "functioning as a sighted person" and "functioning as a blind person?" Aren't we all simply functioning as human beings--human beings who might have varying levels of eyesight and use a variety of tools and skills for the tasks of life? The authors' view cannot accommodate this sort of continuum, and therefore does not permit the person with low vision to use nonvisual skills when needed.
The authors also argue against the use of the term legally blind. By using this term, they state, we are "blinding people by definition." Legally blind children, the authors tell us, can be "psychologically affected by being considered blind by teachers and relatives." Chillingly, they add, "To call a person with severe vision loss 'legally blind' is as preposterous as calling a person with a severe illness 'legally dead.'"
Research has been done to assess teachers' attitudes toward Braille. The conclusion was that we can rest easy--teachers love Braille. But the researcher failed to ask the salient question: what about Braille for partially sighted children? It turns out that teachers are strongly in favor of Braille, but only for those whom they categorize as "functionally blind." Categorizing children (and adults) in this circumscribed way leaves out the idea of proficiency in reading and does not allow for the possibility that a partially sighted person who uses eyesight effectively for many tasks may not be able to use it effectively for reading.
The 1997 "Braille amendment" to the Individuals with Disabilities Education Act (IDEA) ensures the right to learn Braille to every blind and visually impaired student unless the child does not need Braille now and will not need it in the future. There is no acuity requirement in the law. There is no requirement for an evaluation in order for the child to be taught Braille. In fact, according to this law, an evaluation is needed only if Braille is to be ruled out.
One response to the NFB's success in getting the right to learn Braille into state and federal law was the development of what is called the learning media assessment, or LMA. The LMA is an evaluation process used to determine the appropriate reading medium for a given child. Though I'm sure it was never intended to be such, the LMA has become a barrier to full literacy for the partially sighted student. Many teachers believe that an LMA must be administered before a child can receive Braille training. Some states even require it, though such a requirement, by being more restrictive, runs counter to federal law.
Another problem with many LMAs is that they separate the student's future literacy needs from his present needs. The intent of the Braille amendment to IDEA was to ensure that students who will need Braille in the future get Braille instruction now, before they fail in school. However, many assessments instruct teachers to decide upon an "initial literacy medium" (most often print), even for students with progressive eye conditions, and then tell them to add in "supplemental literacy tools" later when needed. This notion runs contrary both to the spirit and the letter of the Braille amendment.
One widely used LMA describes itself as objective, evidence-based, and data driven. However, there is actually no research behind either its approach to evaluation or the conclusions it reaches. It also self-describes as best practice, but there are no results to study to determine if that is true. The assessment instructs teachers to observe the student doing ordinary activities and to note whether the child does them using what it calls "the visual channel," "the tactual channel," or "the auditory channel." The teacher then determines a "primary sensory channel" and a "secondary sensory channel" and decides which is the child's "preferred sensory channel." The "preferred sensory channel," the authors state, is also the "most efficient learning channel."
This approach is problematic in several ways. For example, what is the basis for the claim that the preferred sense is also the most efficient? What is the definition of efficiency in this context? The authors do not explain, and the child's "efficiency" is not measured in any way. Is it wise to make serious decisions on our children's behalf based on their preferences? Most children would prefer recess over long division, but we teach them long division anyway. Most children would rather eat M&Ms than spinach, but we don't give them M&Ms for dinner. What is preferred by the child is not necessarily what is best for the child.
Data collection in these assessments is also problematic. Data is indeed collected, but is it data on which to base a decision regarding reading medium? Here are some examples.
A child was observed wiping his fingers with a napkin. The teacher marked T for tactual.
A boy was noted to scratch his side. The teacher marked T for tactual.
Aside from the fact that it would be impossible to wipe fingers or scratch an itch visually or auditorially, these examples also exemplify a problem: actions such as wiping and scratching are not useful indicators of what a child's reading medium should be.
The data collection method also allows for inconsistencies and subjectivity. A boy was observed bouncing on a ball. This was marked V for "visual." Another child was noted to take off his glasses. This was marked tactual. Then he put on his glasses. This was marked visual. A girl was observed picking up a bowl--this was marked tactual. She then picked up a strainer, a bucket, and a plate. All were marked tactual. In a different assessment, a boy was observed picking up a piece of lettuce. This was marked visual. Then he picked up a piece of cheese and a pencil--both were marked visual. We know that the child did not pick up the cheese visually and that the observers must have been thinking about visually directed reach, but I'm afraid that the approach allows for too much inconsistency and for the observer to record subjectively that which he already believes to be true. With all the references made to objectivity and evidence in the assessment, the authors themselves admit that "professional judgment is still the most critical element in the interpretation of these data."
Bias toward print and the use of vision is evident throughout. Here is an example from a case study presented in the book.
Little Kevin is five years old and in kindergarten. He has been exposed to both Braille and print readiness materials. Though he is able to keep up visually now, teachers are concerned that he might have difficulty when the print size decreases in later grades. Kevin uses his vision, the authors tell us, to complete tasks that require gathering information. Kevin's vision is 20/800 in his good eye. His working distance for looking at objects and pictures is two inches. "His nose," the authors relate, "[is] generally on the paper." They tell us that Kevin chooses [emphasis mine] to rely on vision for gaining most information, and that he appears to have confidence in his visual abilities. Kevin, I remind you, is five years old.
When it comes time for recommendations, the authors state: "The decision to begin reading instruction in Braille or in print is difficult in this situation and, indeed, cannot be made at this time." We must wait, they tell us, until a clear pattern emerges that will indicate Kevin's most efficient reading medium. It is important to allow enough time for this to become evident, the authors inform us, even if Kevin is older when a determination is made. They go on to suggest that if a clear pattern has not emerged by the middle of first grade, Kevin should be taught to read ... in print. To be fair, I should mention that the authors do not rule out Braille for Kevin. They just relegate it to the position of an option, a possibility, a supplement, something that might be taught, sometime, at some later date.
Since the LMA process is often used to rule out Braille, there is sometimes a bias against Braille from the start. Often the students chosen to undergo evaluation are those for whom someone has already decided Braille would not be appropriate. In these cases, the assessment is given to provide the documentation, the "proof" that the child does not need Braille.
There is a section in the manual called "Benefits of Braille Reading and Writing." It is an appendix to the book and consists of five bulleted points, a total of eighty-two words, in a book of 220 pages. The section reiterates that Braille is for blind people. Again, I ask, must there be such a sharp delineation between using print and using Braille? Can't we instead shift the focus to the benefits of full literacy, or of being able to keep up with the class? Unfortunately, the assessment asserts that "it is likely that a student with a visual impairment will read at a slower overall reading rate," a statement that establishes lower expectations for the partially sighted student from the outset.
One year, when I was preparing NOPBC activities for the NFB national convention, I was looking for a middle school student to speak on a youth panel. I called one of our families in Illinois and asked the mom if her son might like to be on the panel. The speech would have to be written out, I told her, and her son should practice reading it. "He'd love to," the mom replied. "But could you just ask him questions instead of having him read? He just started learning Braille [after a two-year battle, I might add] and he can't see to read a speech in print." While the schools ask us, "Why do you want to make that child blind?" I'm asking why would anyone want to make a child illiterate and unable to read even a simple speech?
In response to all the problems with learning media assessments and the ways they can end up denying full literacy to partially sighted children, the National Federation of the Blind brought together a panel of experts in Braille and teaching to create a brand-new assessment, one that would not be biased toward print, but instead would put the power of Braille literacy in the hands of children who need it. Teachers and parents can access the National Reading Media Assessment, or NRMA, free of charge at <www.nfbnrma.org>. The NFB also provides free of charge the downloadable book, Integrating Print and Braille: A Recipe for Literacy, at <https://nfb.org/images/nfb/publications/books/integrating-print-braille/ integratingprintandbrailletoc.html>.
I receive call after call from parents who feel very sorry for their partially sighted children. They watch them struggle to keep up. They worry about their safety. And, you know, these children do struggle; they aren't safe. But why? Could it possibly be because they are not given the alternative skills and tools they need? Because they are being asked to do 100 percent of life's tasks visually with only a small percentage of usable vision? It just doesn't make sense!
Sometimes these kids do all right, but too often they're passed along from grade to grade. They read very slowly; they don't learn math; they're placed in a special education room, even though they don't have any learning disability. They're given accommodation after accommodation--someone to take notes for them, someone to walk them from classroom to classroom, someone to carry their tray for them and lead them to a table, sometimes even eat lunch with them.
What if, instead of accommodations, these students were given the opportunity to gain age-appropriate skills? What if, instead of assistance, they were given the tools that lead to empowerment and independence? What if, instead of seeing themselves as vulnerable and powerless, they learned to see themselves as in control, as competent, confident, equal participants in the world?
Imagine what could happen if every parent and teacher heard our message--that it's okay to be blind, that blindness does not have to be a tragedy, that blindness doesn't have to stop a person from achieving what he or she wants in life. Imagine if every parent heard what the research shows--that partially sighted people who receive Braille instruction in the early grades four to five times a week achieve literacy levels on a par with or above fully sighted peers; that of the blind and visually impaired people who are employed, over 80 percent are Braille readers; that partially sighted people who embrace nonvisual skills have higher self-esteem and broader, more active lives.
What if, instead of placing emphasis on preferred sensory channels, we could change the focus to skill development and getting the job done? What if parents heard that what is important is not which sense the child uses to read, but whether or not the child is able to read fast enough to keep up with the class? What if we could change the question from "How much can the child see?" to "Does the child have a skill or tool to accomplish the task effectively?"
The work and initiatives of the NFB are creating a new reality. Instead of hearing that providing Braille would be giving up on a child, parents will learn that nonvisual skills are a viable option. Instead of accepting a slower reading pace, parents and teachers will realize that expectations can be the very same for partially sighted children as for other children in the class. Instead of providing accommodation after accommodation, the adults in a child's life will understand that if the blind child is not able to keep up, what is needed is not an accommodation, but an empowering skill or tool! Every child deserves to have the tools that will enable him or her to keep up with peers, perform to maximum potential, and lead an independent, respectable, and empowered life.