American Action Fund for Blind Children and Adults
Future Reflections Winter 2020 PERSPECTIVES
Our NFB Journey
by a BELL Academy Parent
From the Editor: The National Federation of the Blind is a membership organization, and a vast amount of its work is carried out by volunteers at the state and chapter levels. Most of us pitch in wherever we feel we can make a difference. This story by one of our BELL Academy parents captures the spirit of the work we do in the NFB and the power of passing it forward.
We were trying, at the time, to get out of Dodge. Flustered and sleep-deprived, we were new parents who had recently learned that our firstborn baby's beautiful peepers were impaired and sensitive to the sun. The diagnosis suddenly made our bright, sunny town seem like a dangerous place for our new babe, and we started making phone calls in an attempt to move to a cloudier climate.
Among the countless calls we made was one to an early intervention specialist in another state. "Are you going to the NFB convention?" the person on the other end asked casually. "It's pretty close to you guys this year."
"I'm sorry, what's the NFB?" I asked her.
I don't recall her exact explanation, but whatever it was led my husband and me to pile into our car a few months later, travel squarely out of our comfort zone, and set our newly mobile crawler down on the floor of a hotel room. We really didn't know what we were doing, but we were there to meet blind people who could tell us what kind of life our son could lead.
Months earlier I made the decisive move to switch off our son's electronic baby swing lullaby and switch on the Stevie Ray Vaughan station on Pandora. It was a small decision, based on false stereotypes I held at the time. Even so, it signaled an important switch in my thinking. If our son's eyes couldn't see the rotating mobile on his baby swing, by golly, we were going to give his ears something better than beeping baby swing music! "We've got this," we told ourselves. "We'll figure it out."
We had never met a blind person in real life, but Hollywood told us that blind people were often musicians. At the NFB conference, we learned that, contrary to media stereotypes, blind people are also engineers, teachers, lawyers, doctors, and members of just about any other profession one can imagine. We listened with a mixture of relief and awe as, one by one, these professionals forever changed our definitions of blindness and visual impairment. They were as poised, confident, and capable as any of their fully sighted counterparts. As one speaker described his journey as a successful, blind artist, tears welled up in my own artist eyes. I had not even realized those tears were there beneath the surface. My suppressed fear dissipated. My child might experience color and art after all, even if he did so differently from the way I experienced those things. Spoiler Alert: Our now elementary-school child enjoys music as much as anyone else. However, it turns out he is not a musical prodigy, but a budding artist, like a number of others in his family. Art is one of his favorite classes at school, and he spends a lot of time drawing and creating each day.
In a workshop at this first convention a fellow mom leaned forward and whispered into my ear, "Have you considered Braille for him?"
My eyebrows lifted. "We haven't considered potty training yet!" I exclaimed.
"Well, keep it in mind," she persisted. "How else will he read his valedictorian speech if the sun gets in his eyes?"
How else will he read his valedictorian speech if the sun gets in his eyes—it was such a powerful question. Her words stuck. We are very fortunate to have had the opportunity to attend an NFB convention when our child was so young.
When we got home from the conference, I told our child's early intervention teacher where we had gone.
"The NFB?" she repeated, clearly skeptical. "They're kind of radical."
Fast forward a few years, past unrelated family losses and several moves. Past the very first IEP meeting, where Braille was suggested and we ignorantly turned it down. Flash past the first preschool experience, where our son's need for services and accommodations went ignored, where small print was expected, and where books were read in front of sunny windows. Head past the painful drives home from school when my sweet child rubbed his watering eyes and begged me to answer him, "Mommy, why do my eyes hurt so much? Can you make them stop hurting?" On we go, past my days of online graduate classes and headaches from my 20/20 eyes from reading PDF after PDF for hours on end. How would my low-vision child handle grad school, armed with only a computer screen and large print, when my fully sighted eyes were struggling? How would my language-enamored child read novels without getting headaches? How would he understand spelling, punctuation, and Shakespearean puns with nothing but audio? What about grad school math classes? Again that fellow mom's words echoed in my head, "How will he read his valedictorian speech if the sun gets in his eyes?"
Our son needed Braille.
The school district where we lived at the time disagreed. Without so much as an assessment, with barely a glance at my child playing happily on the playground, they refused Braille instruction and scoffed at our request. "He has too much vision," we were told.
Without many options, with little idea where to turn next, we called the "radical" NFB.
The NFB listened, and we learned. They told us about Functional Vision Assessments and advised us to request one. Sure enough, when the report came back, it recommended dual media; our son would learn to read both print and Braille!
Next we asked how we could help our son learn orientation and mobility (O&M) techniques to keep him safe. The local school district had declined to provide cane instruction. "Just hold his hand when you go out," they told us.
The NFB directed us to the section of our parents' rights booklet that said we had the right to request an independent evaluation if we felt the initial evaluation was not accurate. The assessment that followed was much more thorough, evaluating our son in unfamiliar areas in addition to the familiar setting of his school. The instructor agreed that yes, there were strategies he should learn that would help him stay safe in unfamiliar areas.
In the years that we've been involved with the NFB, we have yet to experience even one thing that is "radical"—unless you consider it radical to expect high standards for blind people, equal access to education and technology, and the elimination of destructive stereotypes. Sadly, we have learned that some people do consider this attitude radical.
We moved again and enrolled our then-preschooler in the NFB BELL Academy, where he learned nonvisual skills under the guidance of blind teachers. His confidence soared. After all our reading and research, after the early intervention and special opportunities we worked hard to provide for our son, the NFB BELL Academy gave him the critical gifts that we, as fully sighted parents, could not give. It gave him the skills, perspective, and confidence that can only come from blind and visually-impaired adults. It gave him the opportunity to play and bond with blind and low-vision friends his age. They laughed together as they practiced Braille, cane travel techniques, and other nonvisual skills.
Here's one thing about our kid (and about many kids with low vision or legal blindness): he can pass for fully sighted. Like many fully sighted and blind/low-vision kids, he's curious and intelligent. He races around the playground, plays community sports, and has tons of typical friends. Like the early intervention specialist who warned us that the NFB is "radical," other people have questioned our decision to send our child to a camp of blind kids. "He doesn't fit in," they said. "He won't like it."
But that's not what happened. In fact, our son loved it. Before BELL ended, my sweet child, with tears in his eyes, begged to go back the following year. In that two-week program he blew through his annual IEP goals. We had to hold an additional IEP meeting before school started so we could raise expectations appropriately. He's been to BELL several times now, and it's been a wonderful experience each year.
Every time my son has needed help, the NFB has been there. We have been touched by the power of so many passionate people who are willing to pay it forward. Just as people say, "There's an app for that," the NFB could very well say, "There's an experienced, capable, highly qualified blind professional for that." When it seemed that we would be forced to forego Braille instruction or prematurely take our child out of the Montessori school where he was thriving, we learned about a lovely, intelligent, snappy blind teacher. Not only was she a trained Montessorian, but she was the director of her own large, highly successful Montessori school. She readily shared her expertise by writing a letter explaining the benefits of both Montessori methods and Braille for visually impaired kids, and she attended our IEP meeting via phone from across the country. Our wonderful IEP team listened, and our child got to start public school when he was ready without missing any Braille instruction along the way.
The NFB's commitment to my child's education didn't stop there. Our supporters in the Federation stuck by us as our son began elementary school and learned to read. Even in the excellent district where we currently are lucky to live, we have found it helpful to bring an advocate to IEP meetings. Paid advocates cost hundreds of dollars, but through the NFB we have connected with blind adults and parents of blind children who are willing to advocate for my son free of charge. They have helped explain the importance of high standards and helped to make sure the IEP document protects our son's education the way it was intended to do. Through Facebook, even more Federationists have taken the time to answer questions, troubleshoot challenges, and even connect parents of blind children in my hometown. Even better than that, they have educated us on our own parental rights and helped to make me a better advocate for my son. I hope someday to pay it forward as they have done.
Best of all, the National Federation of the Blind has taught my son how to see himself—not with his eyes in the mirror, but in the ways that truly matter. Our friends in the Federation have taught him that he can live the life he wants, and that vision is not what holds him back.
You might ask how we know all that. The following story is just one of many examples:
Lately I've been reading James and the Giant Peach to my son at bedtime. For those of you who have not read it in a while, in the book there is a rather pessimistic earthworm character who is blind.
The worm's blindness had been mentioned three times in the story so far, always in a negative light. I just skipped the first two references because it was late, and we were all tired. The worm's blindness wasn't critical to the storyline, and honestly, I wasn't sure how to handle it. But last night I was going too fast, and I wasn't thinking. I didn't stop to censor a rather terrible part where the earthworm's friends are thinking about feeding him to seagulls, and the earthworm says something about being pecked to death and not even being able to see them coming because he's blind.
My happy, spunky kid's face fell. I tried to do some damage control by pointing out that real friends do not feed their friends to seagulls and explaining that the earthworm was smart and would figure out a way out. It helped some.
But tonight we talked about that earthworm again. This time we talked about what it means to have a victim mentality. And we talked about how some people, blind or not, see themselves as victims while others, blind or not, see themselves as strong. And we talked about how what we believe about ourselves matters because it tells us, and the rest of the world, what we can do.
Then I asked my kid, "How does the NFB see themselves, victim or strong?"
He replied, immediately, confidently, proudly, "Strong!"
Then I asked him, "And what about you? Victim or strong?"
His face quickly went through the most heart-melting transformation. He smiled. A kind of surprised-then-sure-then-cocky kind of smile.
"STRONG!" he replied with every bit as much confidence and pride.
Y'all, I could lie and say that confidence just comes from home, but I know it comes mostly from the NFB BELL Academy. It comes from learning nonvisual skills. It comes from having strong, capable, professional blind role models through the NFB. It comes from hearing smart, confident, accomplished blind people speak into microphones behind a podium and hearing others clap at their words. It comes from walking through a sleek, fancy building, touching the Braille on the plaques, and learning about all the things blind people can do.
The National Federation of the Blind gave our son that strength and confidence, and truth is more powerful than fiction.
Thank you, NFB.
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