Future Reflections         Convention Report 2010

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KNOWING IS NOT ENOUGH

by Laura Weber

NOPBC President Laura WeberIntroduction by Mark Riccobono: Laura Weber currently serves as president of our Texas Parents of Blind Children. She will soon be certified to teach blind students. She has completed all of the coursework to become certified as a literary Braille transcriber from the Library of Congress. Earlier this week she was elected to serve as the new president of the National Organization of Parents of Blind Children. Here is Laura Weber!

When Mark asked me to speak to you today about the failure of the education system in meeting the needs of the blind, my first question was, "How long will I have?" I could stand here all day listing the flaws in the current system, but I'd be preaching to the choir. This crowd, more than any other I could address, understands the problems our children face. Some of you have blind children. Some of you were blind children. Some of you teach blind children. Many of you have experienced the failure of the education system in meeting the needs of the blind, and those who haven't experienced it certainly have heard about it.

I, too, have experienced this failure. People may look at me and the other parents on the boards of Texas Parents of Blind Children and the National Organization of Parents of Blind Children and think, Wow! These parents really have it together. They know what it takes for a blind person to be successful. I bet their kids are getting the best services available! Wrong! Knowing what your child needs and getting what your child needs are two very different things.

A Few Examples

One national board member has a daughter in elementary school. Kendra was in the first grade last year. She's incredibly bright and reads at the fourth-grade level. She reads Braille faster than 86 percent of sighted first graders read print. Kendra's parents were told that she didn't qualify for the gifted program, despite standardized test scores ranging from the 96th to the 99th percentile for first graders. After two months of trying to use logic and the law with the school system, Kendra's parents requested a mediator. At that point the district decided that maybe Kendra qualified for the gifted program after all.

This is an example of blatant discrimination in general education. Would a sighted child with the same reading level and test scores be denied acceptance into the school's gifted program? No! Kendra's parents knew that, but knowing wasn't enough to prevent the problem.

Another national board member has a son in junior high. David began missing school in fourth and fifth grade for headaches that his parents were told were due to sinus infections. A couple of days at home each time seemed to solve the problem.

In the sixth grade the problem worsened. A few days off now and then no longer helped, and the headaches were constant. David lost three months of school that year. He underwent MRIs, CT scans, a lumbar puncture, and drug treatments. Finally the doctor correctly diagnosed the problem. David had occipital neuralgia. This is what the National Institute of Neurological Disorders and Strokes says about the condition: "Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. This pain is caused by irritation or injury to the occipital nerves, which can be the result of trauma to the back of the head, pinching of the nerves by overly tight neck muscles, compression of the nerve as it leaves the spine due to osteoarthritis or tumors or other types of lesions in the neck."

What does this have to do with the education of blind children? Therein lies the cause of David's problem. Because he was blind, his teachers saw no reason why he shouldn't be seated facing a wall instead of facing forward like the rest of the class. Their reasoning was that it prevented the cords from his equipment from stretching across the floor and creating a hazard for the other students. David didn't need to be seated by the corded equipment, but they thought it would be more convenient. David had to turn his head constantly to face the front of the class. After several years of this he developed the occipital neuralgia that caused him constant pain and months out of school.

This is another example of discrimination and ignorance in general education. Would a sighted child be expected to sit at a desk facing the wall? No! David's parents knew that, but knowing wasn't enough to prevent the problem.

A Texas board member has a daughter who just graduated from high school. Kayleigh was an honors student, active in choir and drama. She's the secretary of the Texas Association of Blind Students. She's also a 2010 NFB scholarship winner. She must have received the very best educational services, right? Wrong!

When Kayleigh graduated, her visual reading rate was around 160 words per minute. Most seniors in high school read between 250 and 350 words per minute. Kayleigh's Braille reading rate was 40 words per minute. This may sound slow until you realize that she didn't receive any Braille instruction until she was a senior in high school. For years Kayleigh and her parents knew she needed Braille in addition to print. Her teachers wouldn't listen. To borrow a theme from Carol Castellano's wonderful speech at last year's convention, the teachers said, "This child doesn't need Braille. This child is not blind."

This is another example of ignorance, this time in special education. Would a sighted child who reads 100 to 200 words per minute less than her peers be denied help to read more efficiently? No! Kayleigh's parents knew that, but knowing wasn't enough to solve the problem.

System Failure

What's really scary about these examples of ignorance and discrimination in the education system is that they're true stories about the children of parents active in the NFB. These parents have the attitude, the information, the support, and the mentors that their kids need. Yet they still have to fight, year after year, to ensure that their kids get a quality education. What about the parents out there who have never even heard of the NFB? What about the parents who don't know what their kids need? What kind of education are their kids getting?

The current education system is failing to educate too many of our blind students. I have given some examples, and I'm sure that the people in this room can give dozens more. We know there is a problem, but knowing isn't enough. We need action.

Root Causes

To solve the problem, we need to understand the root cause. Here's where it gets a little bit tricky. Humans love to assign blame. We say, "If blind kids aren't learning, the teachers are to blame." But there are some excellent teachers out there, and we all know that those who are not so outstanding are only teaching what they have been taught. Okay then, we say, teacher education programs are at fault. But again, there are good programs out there. You really can't blame a program. Someone developed it, someone decreed that it was sufficient--are those people to blame? How about the people who set the curriculum, or set the standards, or prepare the materials--are they responsible?

I'd like to propose that we don't blame anyone, but that instead, we step up to the plate and do something about it!

When I started researching for this speech I found a wonderful article in an old Future Reflections issue. It stood out for me in its simplicity, listing nine specific ideas that underlie a good education for blind children. I'd like to read that list to you now.

1. Blind people, given the proper training and opportunity, can compete on a basis of equality with their sighted peers. This should be the basic philosophy for any program and standard for evaluating programs for the blind.

2. It is respectable to be blind. The word blind should be restored to the vocabulary of educators and used frequently. [Applause.]

3. All blind children, including legally blind children who have some vision, should learn to read and write Braille.

4. All Braille users should learn to use the slate and stylus as early as possible and be required to use it regularly.

5. Teachers of blind children should be required to demonstrate proficiency in reading and writing Braille.

6. All blind children should be given the long white cane and instruction in its use. The cane should be with the child throughout the day.

7. Sleepshades should be used routinely when alternative techniques such as cane travel or Braille are being taught to children with partial vision.

8. Educators should work with the organized blind to expose blind children of all ages to competent, knowledgeable blind role models.

9. Special education teachers of the blind should be required, as part of their professional growth and continuing education, to attend conferences or conventions of blind consumers. [Applause.]

We may all have one or two things we'd like to add to the list, but I think we can safely say that, if we want our blind children to succeed, that list of nine things is a pretty good start. There you have it, problem solved.

But before we pack up and go home, here's a sobering fact. That list was written by my friend and mentor, longtime president of the National Organization of Parents of Blind Children, Barbara Cheadle, in 1985. That list was written twenty-five years ago. We knew then what our kids needed. We knew back then what constituted a good education for blind children. Yet our education system is still failing too many of our blind children today.

Looking Ahead

The news isn't all bad. The NFB has made huge strides in the twenty-five years since that list was written. The Federation fought and won the battle to have a Braille revision included in the Individuals with Disabilities Education Act (IDEA). The NFB promoted legislation ensuring that textbooks are delivered on time. It created a certification process for teachers that assesses their Braille competency, developed a new learning media assessment that isn't biased toward print, initiated a teacher recruitment and mentoring program, carried out advocacy and consultation for countless families struggling through the IEP process, and sponsored a groundbreaking Braille research summit that brought professionals and consumers together with a common goal. These are only a few examples of what the NFB has done and is doing to improve the education of blind students.

Many of our blind kids have succeeded due to excellent services or in spite of poor ones. This year's class of scholarship winners is living proof of that fact. But we want that success for all. We want equal opportunity for every one of our blind children.

My daughter Lindsay, who is blind, will turn eight in two days. I want a good education for her, and I know it is not guaranteed. That's one of the reasons I recently changed careers. After working for seventeen years as a biomedical engineer in the aerospace industry, I rethought my career priorities. I am now in the last class of my master's program in special education. I look forward to being certified as a teacher of blind students. [Applause.]

I was honored to be part of an education reform task force that met in Baltimore in June. I can assure you there was hope in that room--not just hope, but conviction. Dr. Maurer committed the power of the NFB to solving this problem now. He made it very clear that knowing what our blind children need isn't enough. We need action. No longer will we be content to chip away at the problem, helping one family at a time. No longer will we stand by while the system continues to fail so many of our children. We are waging a battle here, and the National Federation of the Blind has decided that it's time to go all out.

The military has a name for the kind of attack we're planning: shock and awe. It's shock and awe time! The assault is coming from all directions: teacher training, standards, curriculum, policy, assessments, research, and leadership development. We're developing a multi-level sustained approach to initiate wide-ranging, long-lasting change in our education system. We will reach families of blind children and the professionals who serve them. We will find more good teachers and more good programs, and if we can't find them, we'll make them. We will build relationships with professionals in the blindness field, and we'll get them to our trainings and our conventions as part of their professional development. We will raise the expectations and standards for all blind students.

The road will be long and there will be obstacles, but we didn't choose this fight because it would be easy. We chose this fight because knowing what our blind children need isn't enough. We won't rest until they get what they need!

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