Braille Monitor                          October 2018

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From My Blind Child to Our Blind Children—Why the National Federation of the Blind Is the Answer

Carlton WalkerFrom the Editor: Carlton Walker is one of the most interesting people you are likely to meet. When it comes to brains, she has an abundance of them. When it comes to motivation, she has more than her share. When it comes to education, she absorbs knowledge like a sponge, and she is not intimidated by the need to get more of it. When it comes to passion and love for her blind child, there is no calibrated scale that can measure that which is infinite.

We work hard to get our children the education they deserve, and we know that environmental integration is not the same as educational integration. When Carlton learned this, she threw herself into doing something about it. Here is the speech she gave at the 2018 NFB National Convention on Sunday, July 8:

Good morning, my friends. I thank the National Federation of the Blind and our President, Mark Riccobono, for inviting me to speak with you today. I also thank you for being here. Each of us has the power to change the world every day; today, you are taking the opportunity to do so.

Since I was in eighth grade, I have wanted to be an attorney. I started my own law firm in 1997, and I still continue to serve clients in my solo practice. In 2008, I returned to school and earned a master’s degree in education and Pennsylvania certification in teaching students with visual and multiple impairments. I taught students in South Central Pennsylvania for more than six years, and I then moved to the National Federation of the Blind, where I served as the manager of Braille education programs for almost two years.

Like many parents of blind children, blindness and blindness education became part of my life because of my child, Anna Catherine. Early on, blindness was not a factor in her life or in ours. Soon after she was born, she had many health issues, underwent many tests and surgeries, and spent way too much of the first year of her life in hospital beds.

In mid-December 2001, Anna Catherine was not yet nine months old, but she was hospitalized again. When we took her home, she was on twenty-four-hour oxygen, on continuous feeds with a feeding tube, and on a heart-lung monitor at night. Before we left the hospital, the doctors told us that the upcoming Christmas would likely be our last with her. We were devastated.

In the spring of 2002, after a change in hospitals and doctors, Anna Catherine gradually began to improve. Anna Catherine was still very delayed physically, and she received services under Part C of the Individuals with Disabilities Education Act (which refers to services for children who are not yet school age). She also had privately-provided weekly physical therapy, occupational therapy, speech therapy, oral-motor therapy, and aquatherapy; we were on the road a lot and were very, very busy. In her second year of life, with all these supports, Anna Catherine started to make those first-year milestones. Things were looking up.

In June of 2003 (after we had celebrated TWO Christmases with her), Anna Catherine finally began to eat and drink by mouth as a result of a month of an in-patient feeding therapy program, and we got rid of the feeding tube. We believed that her struggles would soon be over.

I knew that lazy eye (amblyopia) runs in my family, and Anna Catherine’s eyes never acted like most children’s, so I took her to a pediatric ophthalmologist—to wrap up that loose end.

After testing, the doctor came into the examining room ashen-faced. He was unable to make eye contact or even speak. I was terrified. After about a minute of silence, I asked fearfully, “Is she going to die?”

He quickly said, “No” and launched into a bunch of medical jargon. I was still reeling from his earlier behavior, so I didn’t exactly catch what he was saying. From my point of view, Anna Catherine was doing well and starting to eat and drink by mouth—for the first time in two years. Though her vision did not seem to be affecting her life, her father and I delved into the world of pediatric ophthalmology.

As months passed, we had more visits and tests with ophthalmologists, including the wonderful ERG (electroretinogram). My little girl had no central vision, only spotty peripheral vision, and her visual acuity was 20/400. My sweet toddler was legally blind.

In the ensuing years, my husband, Anna Catherine, and I learned A LOT about visual impairment and blindness. Anna Catherine already had been receiving terrific services from physical, occupational, and speech therapists. We assumed that services related to her blindness would be similar. Well, you know what they say about assuming …

Even though I asked, the school would not assess for services related to her blindness. I was told that those services are really more school-oriented and that I should wait for her transition to an IEP—in six months. I didn’t know better, so I accepted what they said. When Anna Catherine was finally assessed, I was told that she would be a large print reader. After all, she could read seventy-two-point font text at four to six inches.

This didn’t sound right, but what did I know? I was a mother, an attorney—not an “educational professional.” I did do some research of my own into non-school services. Through a series of fortunate accidents, I learned about an upcoming conference in Baltimore, Maryland, the “Beginnings and Blueprints” Early Childhood Conference sponsored by a group called the National Federation of the Blind. At the time, I wasn’t sure how much help it would provide—after all, Anna Catherine could see things. Nevertheless, my husband, Stephen, Anna Catherine, and I left home on the evening of May 5 in 2005 headed toward Baltimore. Little did we know how much our lives would change—for the better—as a result of that weekend.

At the NFB Jernigan Institute in Baltimore, we learned about the importance of Braille, cane travel, and nonvisual skills—even for our daughter, who could still see some. We learned that our daughter’s future success would not be measured by her remaining vision; it would be measured by her facility with blindness skills. But, most importantly, we met competent, confident blind adults—and these blind adults cared about all of us and wanted to provide us the knowledge, skills, tools, support, and love needed to help Anna Catherine grow into the independent, confident young woman she has the right to be.

Truly, it was a transformative weekend. However, when we returned home, nothing at school had changed. We understood that Anna Catherine needed blindness skills, but her “teacher of the visually impaired” disagreed. So began the IEP Wars. Like the Clone Wars from Star Wars, the IEP Wars involved multiple battles against powerful antagonists.

There were the Braille battles. It took months of emails, telephone calls, meetings, and an Independent Educational Evaluation to get Braille instruction started. Once instruction started, it was slow. The teacher told Anna Catherine that Braille was hard—not a particularly successful educational strategy. She told me that Anna Catherine was “too tactually defensive” to learn Braille—not a particularly effective means of encouraging parental involvement. During those months, I was on the phone with the mentors I had met at NFB. They were my Yoda—highly intelligent voices of calm and reason to guide me through these battles.

Later we engaged in the O&M (orientation and mobility) battles. Ridiculous “assessments” supposedly indicated that Anna Catherine did not need orientation and mobility instruction. I challenged them with the knowledge my NFB mentors taught me. We lost the O&M Battle, but guess what? We didn’t really lose. NFB resources taught us how to be our child’s first O&M instructors and to teach her to use the NFB long white cane.

In elementary school, there were the Cane Battles. When we demanded that Anna Catherine be allowed to bring her NFB-provided long white cane to school, the teacher told the IEP team that long canes are dangerous—because little boys running in the hall could trip over them. Thanks to my NFB mentors, I was prepared for this foolish statement: I asked the principal if little boys were allowed to run in the halls of her school. We won this battle, but there were others—about cane storage, cane technique, canes on the playground, forced sighted guide during emergency drills, etc.

Truly, a show entitled “IEP Wars” could yield many seasons of episodes for the viewer. Unlike the Clone Wars, however, IEP Wars are not science fiction; they are the reality for thousands of blind children, and IEP Wars continue to be fought every day across this nation. None of these fights are necessary. Students, families, teachers, schools, communities, and future employers would be far better off if we could end IEP Wars and provide blind children the educational services and tools which will provide the free appropriate public education to which they are legally entitled.

So why was there so much fighting? The simple and sad reason is this: school officials did not treat Anna Catherine as a full-fledged student who belonged in their school. I am sad to report that Anna Catherine is not the only blind student who has lived through these battles. After years of needless conflict, I have determined that these battles result from schools taking three unfortunate stances in relation to our children’s and student’s education:

First, many teachers and administrators treat our students as “special” cases and throw out the educational principles they apply to every other student in the school. Too many teachers’ expectations of our students plummet the moment they learn that the child is blind/visually-impaired/has low vision. Instead of providing students the instruction and tools they need to engage as full-fledged students, these kindly teachers and administrators try to remove the need in various ways:

Their motives may be pure, but they are killing our students with their “kindness.”

Second, many teachers assume that, if a student can see some things, the student is not really blind. Sadly, this is especially a problem among teachers of students with blindness/visual impairment and orientation and mobility specialists— educators of blind students, the very educators who should know better. Even today, a great number of “professional educators” strive to “maximize” the student’s vision, despite the fact that vision is not effective, efficient, or reliable for many, or most, academic and functional tasks.

In other words, in all areas of a blind student’s educational life, far too many educators of blind students focus on maximizing vision use—instead of maximizing the student and student’s capabilities.

Third, many people believe that “technology has made Braille obsolete,” and there is an unfortunately high number of educators in the blindness field who perpetuate this fallacy.

So why is this the case, and what can we do about it?

Well, after just a few years of IEP Wars in Anna Catherine’s early elementary education, Stephen and I realized that we could not rely on her teachers to provide the education our daughter needed. Though my law practice was now growing, I cut back on work and started taking classes to become a teacher in the blindness field. At that time the excellent program at Louisiana Tech did not offer online options (it does now), and I lived in very rural South-Central Pennsylvania. A Pennsylvania institution offered online classes, so I chose to get my certification there.

What an experience. My program required six semesters of learning about “visual efficiency” and “low vision” devices, but there was only one class for learning Braille. We also had three whole days of summer instruction in Nemeth Code and abacus. That’s right, the entire class lasted only three days. And guess what? The program I went through had more Braille than many other programs which purport to train teachers to teach blind students.

Is it any wonder that so many graduates of these programs gravitate toward vision and away from the Braille and Nemeth Code their students need for success?

In my orientation and mobility class, we met in-person on six separate evenings. We were exposed to and got to touch and use canes on only one of those evenings, and, out of the two dozen canes we could use for “practice,” only two were long white canes. Is it any wonder that so many graduates of these programs gravitate toward protection and guide techniques, “pre-canes” and “identification canes” and away from the long white canes that can allow their students to achieve independent travel skills?

Our Independent Living Skills course consisted of online coursework and one day of on-campus activity. We used sleep shades during those on-campus activities (such as spreading peanut butter on bread and folding money for identification), and we spent the afternoon eating a meal under sleep shades. While these were good activities, they were rushed, and we did not have time to practice them and become comfortable with them.

Is it any wonder that so many graduates of these programs remain uncomfortable with nonvisual techniques—even when those techniques would allow their students to perform tasks more efficiently and effectively?

As you can see, many programs which prepare men and women to teach blind students focus on vision and give short shrift to nonvisual tools and techniques. However, this is not the greatest weakness of those programs. The greatest weakness, by far, is the lack of interaction with competent blind adults. Truly, it is startling. Every one of my professors was typically-sighted, like I am. While we sighted people are nice enough, we are not experts on blindness. How can any teacher prepare students to be competent blind adults when that instructor has little to no interaction with competent blind adults, much less authentic and meaningful relationships with the blind adults who daily use the skills our students need to succeed?

Obviously, traditional programs are not adequately preparing teachers of blind students, so now we know the answer to why so many school officials resist and even fight teaching our students blindness skills. Now, what can we do about it?

The title of this presentation tells us: the National Federation of the Blind is the answer. The National Federation of the Blind provides the knowledge, resources, and, most importantly, the blind adults who can change the trajectory of the lives of blind children.

The NFB offers 24/7/365 mentorship for blind individuals and their families, tools (like free white canes, and free slates and styluses, and free Braille books from the American Action Fund), and resources (like Future Reflections magazine, the Braille Monitor, the NFB BELL Academy, and our STEM programs).

Why does NFB offer mentorship, tools, and resources?

We offer mentorship, tools, and resources because the National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can live the life you want; blindness is not what holds you back.

My fellow Federationists, we can and we must share the truth: blind children can have the lives they want, and we will not allow any low expectations of “professionals” to hold them back. We will share with them everything the National Federation of the Blind and our members have to offer, and we will do this through another N-F-B: Nurture, Formulate, and Believe.

N—Nurture: We will Nurture our blind children and their families. We will get to know them and invite them to know us. We will share meals, events, laughter, and tears. We will foster meaningful, long-lasting relationships with them, and they will become members of our Federation Family.

F—Formulate: We will Formulate plans to help our blind children gain the skills they need in school, in their communities, and in life. We will help them bring these formulations to schools, and we will demand that the schools teach our children. Teach our children Braille (including Nemeth Code and Music Braille). Teach our children cane travel and orientation skills. Teach our children nonvisual skills, both high-tech and low-tech. In other words, provide our children the free appropriate public education to which they are entitled and which has been the law of our land for more than four decades.

B—Believe: We will Believe in our blind children, no matter what obstacles come up. We will remind them to Believe in themselves. We will model Believing in them for all the world to see. We will show them that they are not impaired, no matter what their vision is or is not. Visual function does not define a person any more than does height, race, or a multitude of other characteristics. Do these characteristics affect how the child develops? Probably, but they do not define the child. We will make certain that they know that our children are far, far more important than what they can or cannot see.

My Federation family, please join me. Join me in proclaiming to blind children and adults across this great nation—the National Federation of the Blind is the answer, and we are with you every step of the way.

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