American Action Fund for Blind Children and Adults
Future Reflections Fall 2019 BRAILLE
For the Love of Reading
by Angela Shambarger
From the Editor: Angela Shambarger holds a master's degree in education in student development, and she has worked at the University of New England in Maine for over twenty years. Currently she serves as the university's Title IX coordinator and teaches as an adjunct professor. She reports that she and her husband have two quirky sons and two goofy Newfoundlands.
It's the end of the 2018-2019 school year, and I am finally sorting through all those school papers that have been awaiting my attention since the spring of 2018. (Please don't judge my housekeeping skills!) In the pile of papers I find a letter I have set aside, written by my son Benjamin in his bold, blocky handwriting on his special dark-lined paper. It is a letter he wrote to himself as part of an assignment at the beginning of his sixth-grade year. The assignment was meant to help the teacher learn about each of her students. The students were encouraged to keep the letters and reread them at the end of middle school in order to reflect on how much they have grown and changed.
In the letter Benjamin's twelve-year-old self writes to his future eighth-grade self, listing all the things he likes to do. At the top of the list he writes in his struggling script that he loves to read.
It's true. Benjamin does love to read. He loves to write, too; he has an oddly dark imagination that enjoys weaving fantastical stories. In fact, he entered a short story contest for middle schoolers and won a prize.
What is important about this sheet of black and white is that it is a snapshot of my son and his life, before. Visually impaired from birth due to a rare retinal disorder, he had always struggled with the mechanics of learning. Was the font large enough? Was the contrast dark enough? Did he have the correct paper and pens so that he could see what he was writing? How large could we blow up this worksheet and still make it legible?
During his seventh-grade year Benjamin's eye condition progressed dramatically. At the start of eighth grade we received a functional vision assessment from his teacher of the visually impaired (TVI) that recommended Benjamin become a Braille learner.
As I write, my eyes well up and my heart aches, recalling the emotions I experienced when I read those words. I got the report by email while I was at work, and I reread it several times before I felt prepared to read it to my husband over the phone. But after the initial shock came an unexpected sense of relief. The weight of our two-year struggle to force Benjamin to learn in a sighted environment was lifted at last. Suddenly and clearly, I understood that what had once seemed to be a sentence to lifelong disability was actually an invitation to independence. Braille would make the written word accessible to my son. He would not have to rely on someone else to read to him or transcribe for him. Braille would open a door to access.
We were anxious about how to sell this plan to my son, with his teenage self-consciousness about being different. We decided to introduce the idea of learning Braille as a way to make school and life better. Braille was a new skill that would mean he wouldn't need to struggle so hard to access the material.
"What do you think about this? Do you think you would like to try to learn Braille?" I asked him.
Much to our surprise, he cocked his head to the side and said, "Yeah, that might be good."
Once we made up our minds, we were fully committed. Benjamin began Braille instruction after the holidays. We ordered books in Braille at different reading levels for our home library. Benjamin's TVI sent home daily reports about how fast he was learning. He even stopped playing violin out of worry that the callouses on his fingertips would make it harder for him to read.
At the same time he became a Braille learner, Benjamin developed vestibular neuritis, an inflammation of the vestibular nerve that causes vertigo, migraines, chronic fatigue, and inability to concentrate or tolerate confusing environments. The illness has hampered his progress in Braille, but he has persevered.
At times we feel as though we are in a race against the curriculum. Now that Ben is in high school, each semester and even each quarter brings new content that requires a new set of skills. Learning these new skills feels a bit like learning a series of new languages. Geometry—math in perhaps its most visual form—was stalled for months while we tracked down the tactile graphics Ben needed. Then he had to learn how to interpret those tactile graphics. We learned to build 3D models out of cardboard and to use 3D printing to create shapes and planes and their intersections so he could understand what each theorem was trying to show him.
It took us a few months to determine which Braille math system Ben would learn, UEB or Nemeth. Finally, in May, we determined that Nemeth was the way to go, since the PSATs and SATs use Nemeth math. Now Ben needs to master Nemeth before he takes his PSATs this year. Fortunately, he earns foreign language credit for his Braille studies. For now we don't have to worry about teaching him the Braille symbols for accented vowels that he would need in order to learn French.
Toward the end of his spring semester, Ben received and began learning to use a device called the BrailleNote Touch. We are continually amazed by this marriage of technology and Braille. Here is a tablet device that will allow Ben to read and write Braille electronically. It will convert almost any electronic document or email into Braille. Now we are racing to master this technology so Ben will be able to keep up with the rigors of his classes and won't start the new school year already behind.
Ben is somewhat distrustful of technology, and he has trepidations about learning to use new electronic tools. He is a bit of a perfectionist, and he likes to do things perfectly right away. However, he has begun to embrace the learning process, recognizing it as a means to success and independence.
If you talk to the team of teachers and rehab specialists working with my son, they will tell you that he has goals. Perhaps they will also say that he is a bit stubborn. Ask Ben about his goals, and he will quickly tell you that he is going to get his doctorate in history and move to England. He hopes to work in medieval restoration or museum curation. Like other teens, he hates the idea of being different or needing help to do the things he has to do. Yet, his desire to do well in school and be independent outweighs this discomfort. For Ben and for our family, Braille has become the path to success.
As I worked on this article, I asked my son for his thoughts on learning Braille. He tells me that he is not sure how Braille will help him in the future, but he believes it will help him and that it is a good tool for him to have. He says that right now learning Braille is like learning a completely new language. His advice to new Braille learners? "Stick with it, because it will be worth it in the end."
Ben has been learning Braille now for a year. This summer he has taken to doing his reading while his older brother is at the table working on his models. Normally he is reserved about discussing his Braille learning. But today, when his brother asks him what he is doing, Ben says that he is practicing "scissor-reading." He explains that it is a method of moving his hands on the page that will help him read faster. As he shows his brother how it works, my older son says in awe that it is "really cool." With an element of pride in his voice, Ben says, "Yeah, it is."
Today Ben finished reading his first Braille novel. I ask him what he thought about it. In typical teen fashion he shrugs his shoulders, gives me a sly grin, and tells me that he "saw the end coming."
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