American Action Fund for Blind Children and Adults
Future Reflections Special Issue on Braille ADVOCACY
by Kate García
From the Editor: Sometimes obtaining Braille instruction can be a challenge, especially when a blind child has additional disabilities. In this article Kate García shares her story of obtaining Braille instruction for her daughter. Kate García is the Director of Program Operations and Data Strategy at NYU’s Program for Inclusion and Neurodiversity Education. She is a speech-language pathologist and the proud mother of Elena.
There is a parable that gets passed around in advocacy circles. A town inspector visits a restaurant that does not have a ramp for people who use wheelchairs. The inspector says to the owner, “You know the building code. Why haven’t you installed a ramp?” The owner motions around the packed dining room and exclaims, “But none of my customers use wheelchairs!”
It is a small story that makes a large point. The customers who need the ramp are not there because the ramp was never built. But the owner, looking around at a full dining room, is convinced he has all the evidence he needs to confirm what he believed all along.
I think about this parable often. I thought about it while I sat in meeting after meeting, across tables from educators and administrators who had already decided what my daughter could and could not do. I think about it when I consider how we arrived here, and how far we have come.
My daughter Elena was diagnosed shortly after birth with Cohen Syndrome, an ultra-rare condition affecting an estimated five hundred to one thousand people worldwide. Cohen Syndrome inhibits the production of a critical protein that transports other proteins throughout the body, somewhat like a molecular Uber. Without that transport system, biological processes are disrupted in ways that affect development, vision, muscle tone, and cognition. Individuals with Cohen Syndrome often exhibit high myopia, retinal dystrophy, joint hypermobility, and a characteristically warm and friendly disposition.
Elena is highly curious, and she is an avid learner. She loves to learn about science, insects, animals, and nature. She can name all of the planets in order. She can tell you which one is the biggest, which is the coldest, and which one has rings. She is, as I often say, smart in unexpected ways.
What Elena loves most in this world are books. When she was a baby, if you offered her a choice between a book and a toy, she always chose the book. Still today, each morning she makes her way down the hall to the living room, arms full of her blankie, dollies, and a book. Sometimes she drops one or two items along the way, stopping to retrieve them without complaint, until she finds me already halfway through my second cup of coffee. She wants to read. She points to every word and waits for me to say it aloud, then moves her finger to the next one. She understands that words have meaning, and she wants to learn them, one by one.
Like many autistic kids, Elena processes the sounds, lights, and unpredictability of the world with heightened intensity. Reading is Elena’s connection to a world that can sometimes overwhelm her mind and body. Books meet her where she is. They ask nothing of her except attention, which she gives completely.
Elena’s vision loss is progressive. By the time she was in second grade, she had approximately five to ten degrees of vision remaining. The window for her to read print was narrowing. Braille was not optional; it was necessary. It was the bridge between Elena and everything she loves. I did not expect that Elena’s educational team would deny her Braille instruction when I requested it. What followed taught me something about the limits of my own expertise and the system I thought I understood.
I am an educator and speech-language pathologist. Currently I serve as director of a program that trains teachers across the country to build more inclusive classrooms for neurodivergent students. I share my professional background not to establish my credentials, but to make an important point. Even with all my years of training across three degree-bearing programs, I can recall only one reference to blindness in a special-education survey course.
That gap in my education and training was not unique. It reflects a systemic issue. Historically, blind children with additional disabilities have been underrepresented in research, absent from training programs for professionals, and largely invisible in broader society. Children such as Elena are rarely seen in the spaces where other children learn and play. The professionals who eventually encounter them arrive with very little knowledge and even less experience. And when knowledge and experience are absent, something else fills the gap.
As a speech-language pathologist, I was taught to ground decisions in three integrated components: best available research, professional expertise, and client values and preferences. This decision-making model is adopted across many disciplines, from nursing to physical therapy to education. Each component is essential. If any of the three cornerstones is missing or faulty, decision-making is compromised.
The research on Braille literacy for multiply disabled populations is woefully scarce. The information that does exist is largely buried in niche academic publications and specialized programs that most educators and clinicians will never encounter. Thus, the first cornerstone, best available research evidence, is compromised before a professional ever enters the room.
The second cornerstone, professional expertise, is informed by formal knowledge and real-world experience, both of which are difficult to develop in the area of multiply disabled blind education. This population is small and scattered. Decades of systemic exclusion from mainstream classrooms, recreational programs, camps, and other spaces means that most professionals have had limited, if any, direct experience with children such as Elena.
The lack of research and experience in training programs and real-life settings creates a massive void in the decision-making triad. This vacuum is exceptionally vulnerable to being filled with biases and preconceptions. Much like the rampless restaurant, these ideas become self-affirming. If a team decides to deny access to Braille instruction, a child will not learn Braille, which then affirms the initial decision to deny it. The absence of outcome becomes the evidence for the assumption, and the cycle continues to feed itself.
Bias does not often arrive announced. It arrives wearing the language of professional judgment. It is most dangerous precisely when it cannot be distinguished from professional expertise by the person exercising it or the parent sitting across the table.
This is the vulnerability I encountered on behalf of my daughter.
The arguments presented for withholding Braille instruction from Elena rested largely on a pre-Braille checklist. The checklist is a non-standardized tool used as a gatekeeping mechanism to determine readiness for Braille instruction. Elena did not meet certain criteria on this checklist, and those criteria were used to justify withholding Braille.
I pushed back. I pointed out that the criteria being applied to Elena (concepts such as directionality and left-right orientation) are not prerequisites we apply to sighted children learning print. Sighted children are saturated with print from infancy, long before they can reliably distinguish left from right. We read to babies. We label classrooms. We put name cards on desks. We do not withhold print literacy until children demonstrate readiness on a checklist! And Elena, for what it is worth, was already reading left to right in print. She was meeting print literacy goals in her IEP. The contradiction was plain.
I presented evidence. I asked questions. I documented everything. And I met with continued resistance. The team had already concluded what Elena was capable of achieving. The checklist did not create that conclusion; it affirmed the presumptions that already existed, much like the restaurant owner gesturing around his packed dining room.
Left on my own to figure out a way to provide Braille to Elena, I racked my brain for where to find Braille books. Books. Library. Libraries have books. I called my local branch and explained that my daughter was blind and that I was looking for Braille materials.
The woman on the phone told me that I was in luck. The library director’s daughter was blind. She would have the director call me.
That call from the director changed everything. She gave me a name: Carol Castellano. I did not know that Carol was, and remains, an integral part of the parent community of the National Federation of the Blind. I was desperate and exhausted from fighting alone. Carol listened, validated what I was experiencing, and quickly moved into action. She connected me with the people of the National Federation of the Blind (NFB).
The NFB filled the void. Research articles were placed directly in front of the people who needed to read them. Strategic guidance followed: what to document, what to request, and how to navigate the education system’s processes for appeal and accountability. Teachers of blind students and orientation and mobility specialists weighed in. And when it became clear that Elena’s access to education was being unjustly denied, the NFB provided the muscle of its legal team.
The NFB provided something that I could not have approximated on my own, no matter how many meetings I attended or documents I filed. I am sighted. However fiercely I advocated for Elena, I could not fully understand and represent the values and perspectives component of the evidence-based triad: the lived experience of a blind person who knows that Braille literacy is not only an outcome in an IEP, but a vehicle for independence, connection, and a full life. That perspective is irreplaceable. It could not be provided by a sighted, albeit determined, parent alone. It took blind people, and the organization built by and for blind people, to bring it into the room where decisions about my daughter were being made.
I felt the entirety of the Federation behind us. It was palpable. The National Organization of Parents of Blind Children (NOPBC) and the Federation connected me with advocates who knew the educational system inside and out. Orientation and mobility specialists and teachers of blind students came to assess and educate. The NFB’s legal team fought for Elena’s right to learn. And behind all of it are the Federationists whose donations make this work possible. Every person carried the same conviction: that blind people, including multiply disabled blind children, deserve to live the lives they want.
Elena is now in fourth grade. She is learning Braille, orientation and mobility skills, and assistive technology. She is thriving. When her TVI arrives for instruction, she smiles and giggles with excitement.
Elena’s fight for literacy changed more than her own education. Her school has since partnered with additional specialists to build best practices for working with blind and deafblind students. Her new TVI taught a Braille lesson to Elena’s entire class. Her paraprofessionals are learning Braille. Her speech-language pathologist joins her Braille lessons. The culture of the school shifted. And because Elena is not her team’s only student, that shift will reach other children for years to come. This is now what fills the void instead of biases and presumptions.
The answer is not cynicism about the professionals working with our blind children. Most of them are doing the best they can with what they have been given. The answer is more research, more training, and more inclusion. Every time a child like Elena is present in a classroom, a community, a story, the void is filled with the truth of what blind students can do. The answer is amplifying the perspective of blind people in every decision that affects blind people. And the answer is organizations like the NFB, which exist precisely to ensure that when a sighted mother calls a library in desperation, the right name is on the other end of the line.
Elena still ends every day with a book. She still begins every morning carrying a book down the hall, stopping to retrieve whatever she drops along the way, unhurried and determined. The world is full of things she will have to fight for. Reading will not be one of them.