Future Reflections         Winter 2010

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Why Do You Want to Make That Child Blind?

by Carol Castellano

Carol CastellanoFrom the Editor: Carol Castellano is president of the National Organization of Parents of Blind Children (NOPBC). She delivered this address at the general session of the 2009 NFB convention on Wednesday, July 8.

A four-year-old child has entered preschool. He is highly sensitive to light and glare. His 20/400 vision makes it difficult for him to make out the print on the 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 light bulbs 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, he 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, 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 has difficulty navigating the hallways and stairwells of his new school. Someone has suggested placing bright yellow tape at the top of each stairway. Someone else recommended hiring a full-time aide to keep the boy safe and also to take notes for him, as he cannot see the board and really can't 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 twenty-four-year-old man 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. When I mention the possibility of training at one of the NFB's adjustment-to-blindness centers, 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 real - only identifying details were changed. When the parents of these children called, they wanted me to understand that their child WAS NOT BLIND!

Frank is a child with albinism, a second-grader. 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 more dense. When his mother suggested at a school meeting that Frank should 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 her expert opinion, though they'd never had a visually impaired student in the school district before. She'd done her research, she told us, contacting directors in other school districts. "NOBODY," she proclaimed, "was giving Braille to kids who could 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 the Braille 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."

In that statement lies the crux of the resistance to providing training in nonvisual skills to children with partial sight. Contrary to the sentiment expressed in a favorite slogan of ours, to most of the general public, it's still BAD to be blind. Current research continues to find that people fear going blind even more than they fear their own deaths! 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 teachers tell them. "She won't have to learn Braille." "He's got a lot of travel vision. He won't need a cane." The child is encouraged to use his remaining vision and is rewarded by making Mom and Dad happy when he is able to see.

Another component of the resistance to teaching nonvisual skills to partially sighted people is the school of thought that holds that the needs of the visually impaired are truly different from those of the blind. One proponent of this thinking is Sam Genensky, the Harvard and Brown University-trained mathematician who invented, back in the late 1960s, the closed-circuit TV. 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? I think we can fairly say that intelligent people of good will fall on both sides of this debate.

A third aspect of the resistance to providing training in nonvisual skills is the way in which most of our teachers of the blind are trained. The approach seems to have grown out of both the idea that visually impaired people really do need different skills and the negative emotional reaction to blindness. A current textbook, Foundations of Low Vision: Clinical and Functional Perspectives, copyright 1996 and reprinted in 2007, includes the Bill of Rights for Persons with Low Vision. Number Four is the right "to develop an identity as a sighted person who has low vision." The authors are careful to state, however, that "the person for whom the use of vision is not preferred, not desirable, or too stressful must be respected for this choice," and "If a person feels more comfortable functioning as a person who is blind, that choice should be respected." What happened to just functioning as a human being?

In arguing against the use of the term "legally blind," this same book states that by using this term 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." And - this is my favorite - "To call a person with severe vision loss 'legally blind' is as preposterous as calling a person with a severe illness 'legally dead.'"

With that kind of attitude underlying the textbooks from which our teachers of the blind are learning their trade, is it any wonder that our students with partial sight are being denied Braille? 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 for whom they think Braille is appropriate - for those they call "functionally blind."

I understand and believe that no teacher ever got into the business in order to deny a child a good education. The decisions being made in regard to reading medium are made not with evil intent, but with seriously misguided thinking.

One particularly insidious element of the training teachers of the blind receive involves what is called the learning media assessment, a process that is meant to determine objectively whether or not a child needs Braille. For the most part the learning media assessment came into existence in direct response to our success in getting the right to Braille into state and federal law.
 
There are many fundamental and serious problems with the learning media assessments in use today. I will focus here on just a few. The assessment most commonly used today, and referred to as the bible and the gold standard, describes itself as objective, deliberate, systematic, documented, structured, careful, data-driven, and evidence-based. Ironically, an assessment can be all of these things and still be wrong.

Bias toward print and the use of vision is evident on almost every page. And, though the assessment claims to be evidence-based, there is absolutely no research to back up either the approach or the conclusions drawn by using it. They do indeed collect data, but is it the data on which a decision on reading medium should be based? The approach is to observe the student doing ordinary activities and to note whether the child does them using what they call "the visual channel," "the tactual channel," or "the auditory channel." If you ask me, the whole thing is more like the science fiction channel!

When the observations are complete, the teacher adds up all the Vs and Ts and As and identifies what he/she calls the child's "preferred sensory channel." The authors inform us that this is also the channel through which the child receives information "most efficiently." Then, based on whether the chart has the most Vs, Ts, or As, the child is determined to need print or Braille. Well, let me tell you that for the partially sighted child being assessed in this manner, the channel turns out to be visual and the reading medium turns out to be print.

To be fair, I should say that there is a section in the manual called "Benefits of Braille Reading and Writing." It consists of five bulleted items with a total of eighty-two words, counting a, an, and the. In a book of 220 pages, eighty-two words on the benefits of Braille!

It's a difficult task even to begin enumerating the problems inherent in this approach, but I'll try. Were there lots of visual channel answers because there were lots of visual items presented? Why did the child use a particular channel for a particular task? Did the child look at that picture visually because no tactile picture was offered? Did the child use vision instead of touch because he has always been encouraged to use it and rewarded for using it? Could it have been the only sense he was allowed to use? Is the so-called preferred sense necessarily the most efficient? And what's the definition of efficient anyway?
 
And since when do we make serious decisions on our children's behalf according to their preference? "Nah, I don't want to do that long division; I prefer recess." "Mmmm, I don't think I'll eat those vegetables; I prefer M&Ms." What is preferred by the child is not necessarily what is best for the child.

Drawing conclusions about whether or not to teach Braille based on an approach so fraught with defects reminds me of the story of the scientist who was researching what happened when you pulled the legs off a bug. He pulled the first leg off and yelled, "Jump!" and the bug jumped. He pulled the next leg off and told the bug to jump and the bug jumped. The experiment continued with the scientist pulling off the legs and the bug jumping until the scientist pulled off the last leg. "Jump!" he demanded. "Jump!" he said again. But the bug just lay there. "Aha!" the scientist concluded. "I have just proved that when you pull all the legs off a bug, the bug becomes deaf!"

During this convention, you've been hearing Dr. Maurer and our other speakers bringing a lot of attention to the problems with the education of blind children. When we decide to put the might and the money and the mind-power of the National Federation of the Blind toward a problem, you can bet we'll get results! Here are just a few of the exciting areas we are working on, in addition to our ongoing programs and initiatives.

I am so excited about these initiatives because they have the potential to remedy these very real problems in the field.

When I was preparing for this convention, I looked for a middle-school-aged speaker for our Youth Panel. I called one of our families in Illinois and asked the mom if her son might like to be on the panel. I told her the speech would have to be written out and that he 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 even to read a simple speech?

Our work and initiatives, ongoing and new, are creating a new reality, one in which claims will be backed up by research; one in which every blind child gains the tools that enable him to keep up with peers and perform to his maximum potential; a reality in which every blind child has the opportunity to be competent, confident, competitive, and empowered.

Fellow Federationists, I couldn't imagine a more meaningful calling in life than to be doing this important work with all of you. Thank you.

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