Why Do You Want to Make that Child Blind?

Written by   Carol Castellano

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 make out 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.  The school principal demands at an IEP meeting 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 4th 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 14-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 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 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 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 24-year-old 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 his getting training at one of our 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 became smaller and 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 how 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 their 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 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.”

I think that in 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, to most of the general public, it’s still BAD to be blind.  Current research continues to find that the public fears 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 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.  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.”

The use of vision, in this view, makes the child normal and acceptable, someone to feel proud of.  And it keeps him 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.  The use of nonvisual skills for these children—associated as they are with…blindness—is absurd, appalling, not even considered.  If the possibility IS brought up, it is met with a chilling response.  When one mom asked for braille for her young 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 set the child free are conflated in the minds of many with giving up, with submitting to failure. 

Another component of the resistance to teaching nonvisual skills to partially sighted people is the school of thought that truly the needs of the visually impaired are 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 safely 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 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, copyright 1996 and reprinted in 2007, includes the Bill of Rights for Persons with Low Vision.  Number four is the right is “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.”  Functioning as a sighted person…functioning as a blind person…  What ever 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 I don’t think they mean a positive effect!).  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 and that would be for those they categorize as “functionally blind.”  Now I do understand and believe that no teacher ever got into the business so that they could deny a child a good education.  The decisions made in regard to reading medium are being 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 which purports to determine objectively what the child’s reading medium will be or, more often, whether or not a child needs braille.  Though a few professionals in the field had been writing about decision-making in this area, for the most part the formal 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 in every aspect of the learning media assessments in use today.  I will focus here on just a few.  The assessment most commonly used—and referred to in the field as the Bible and the gold standard—describes itself as best practice, objective, deliberate, systematic, comprehensive, consistent, reliable, documented, structured, careful, data-driven, and evidence-based.  Well, an assessment can claim to be all of these things and still be wrong.

Though the assessment claims to be evidence-based, there is absolutely no research to back up either the approach it uses or the conclusions it reaches.

Bias toward print and the use of vision is evident throughout.  Bias even permeates the process by which students are selected for assessment.  Since this process is often used to rule braille OUT, the students chosen to undergo evaluation are often those for whom someone has already decided braille would not be appropriate.  The assessment is used to provide the documentation, the “proof” that the child does not need braille. 

Contrary to both the spirit and the letter of the braille section of the IDEA, this assessment separates the future literacy needs of the student from the student’s present needs.  While the intent of the braille amendment to IDEA was to ensure that students who would need braille in the future would get braille instruction NOW, before they failed in school, this assessment instructs teachers to decide upon an “initial literacy medium” (usually print), even for students with degenerative eye conditions, and then tells them to add in “supplemental literacy tools” (that’s a euphemism for braille) later when needed.  This is in blatant disregard to federal law.

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 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 mid-first grade, Kevin should be taught to read…in print  (Pp 45- 48)

I suppose decisions like this make sense when you can make a blanket statement, as appears on page 59, that “it is likely that a student with a visual impairment will read at a slower overall reading rate…”  To be fair, I should mention that the authors do not rule out braille for Kevin.  They just relegate it to a position of an option, a possibility, a supplement, something that might be taught, sometime, at some later date.

Also to be fair, I should point out that 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 82 words—counting a, an, and the.  In a book of 220 pages, 82 words on the benefits of braille.

The assessment instructs teachers 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.”  The teacher then draws squares and circles to indicate the “PRIMARY sensory channel” and the “SECONDARY sensory channel.”  Then she adds up all the squares and circles and Vs and Ts and As and gets the child’s “preferred sensory channel” which, we learn, is also the “most efficient learning channel,” If you ask me, the whole thing sounds more like the science fiction channel!  

The “preferred sensory channel” becomes the basis for the determination of whether the child will use 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.  

It’s a difficult task to even begin enumerating the problems inherent in this approach.  Flaws are evident at every level—from the  assumptions underlying the approach through the quality of the data collected, the lack of objectivity, the decision-making guide, and the conclusions reached.   

These assessments do indeed collect data, but is it the data on which a decision regarding reading medium should be based?  Let me share with you some of the “objective” data presented as examples in the book:  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.  Okay, so far, so good, right?  Just as an aside, though, one would think that it would not be possible to wipe one’s fingers or scratch one’s side visually or auditorially, without the use of the tactual sense.  It brings to mind the possibility that actions such as wiping and scratching are perhaps not the most useful as indicators of what a child’s reading medium should be, but… back to the observations.

 Another child was noted to take off his glasses.  This was marked tactual.  Then he put on his glasses.  THIS was marked visual.  Hmmm.  He turned on the switch on his computer.  This was marked tactual.  He placed a disk in the disk drive.  THIS was marked visual.  Maybe a little lack of consistency here?  Then—this one’s my favorite—a  boy was observed bouncing on a ball.  This was marked as—yes, you guessed it, “visual.”  Kind of strains the imagination.

In another evaluation, 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 marked visual.  Well, what is the difference between these children?  The girl uses her hands to pick things up, but the boy perhaps has telekinetic powers that enable him to pick things up visually without the use of his tactual channel? 

Or is it possible that the approach used in this assessment is inconsistent, unreliable, and groundless!  That it allows the observer to record totally subjectively that which he already believes to be true?  That this sort of “data” would never pass muster in any sort of scientific review?  With all the reverent references to objectivity and evidence in this tome, the authors themselves admit on page 41 that “professional judgment is still the most critical element in the interpretation of these data.”

There are other questions to ask.  When the observers noted a lot of visual channel answers was it because there were a lot 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 alternative was offered?  Did the child use vision instead of touch because he has always been encouraged to use it, taught to use it, and rewarded for using it?  Could vision have been the only channel he was allowed to use?  Is the child’s so-called preferred sense necessarily the most efficient?  Has the child’s “efficiency” been measured in any way?  

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 that spinach; I prefer M&Ms.  What is preferred by the child is not necessarily what is best for 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 commanded.  “Jump!” he yelled at the bug.  But the bug just lay there.  “Ah ha!” the scientist concluded.  “I have just proved that when you pull all the legs off a bug, the bug becomes…deaf!”

What if, instead of all this emphasis on preferred sensory channels and vision, we could change the focus to skill development and just 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 effectively and competitively accomplish the task! 

I get 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; and they ARE not safe.   But why?  Could it possibly be because they are not given the tools?  Because they are being asked to do 100% of life’s tasks visually with only 10% or less of normal vision?  It just doesn’t make sense! 

Sometimes these kids do all right, but too often they’re just passed along—they read very slowly; they don’t learn math; they’re placed in a resource room even though they don’t have any learning disability.  They’re given accommodation after accommodation—someone to take notes for them, someone to get them from classroom to classroom, carry their tray for them, lead them to a table, sometimes even eat lunch with them. 

But what if, instead of accommodations, they 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 not in control, they learned to see themselves as competent, confident, and 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.  Imagine if they heard what the research shows—that partially sighted people who received braille lessons in the early grades four to five times a week achieved literacy levels on a par with or above fully sighted peers; that of the blind and visually impaired people who are employed, over 80% are braille readers; that partially sighted people who embrace nonvisual skills have higher self-esteem and a broader, more active life. 

The National Federation of the Blind is focusing a lot of attention on issues of literacy and the education of blind children, and when we decide to put the might and the money and the mind-power of the Federation toward a problem, you can bet we are gonna get results!

We are collecting data on best educational practices and have an effort underway to recruit new teachers of the blind.  We’ve held the first-ever joint conference on research on Braille.  We gathered a blue-ribbon panel of experts in braille and teaching and created a brand NEW assessment, one that will NOT be biased toward print, but will instead put the power of Braille and literacy in the hands of children who need it!

Once when I was preparing for a 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 his reading?  He just started learning braille [after a two-year battle, I might add] and can’t see to read a speech in print.”

So 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?

Fellow Federationists, this is the important work we have before us.  It will be arduous, but we have the strength; it will be demanding, but we have the energy and the skill.  It will take time, but we have the endurance, the passion, and the will.  My friends, I can think of no more meaningful an endeavor than to be doing this work alongside all of you.  We are in this together; we are in it for the long haul; and we will prevail!

Thank you.

 

Additional Info

  • Topic: Assessments, Attitudes and Perspectives, Braille Literacy, Laws and Regulations, Low Vision
  • Age Group: Any Age