American Action Fund for Blind Children and Adults
Future Reflections Convention 2021 NOPBC CONFERENCE
by Carlton Anne Cook Walker
From the Editor: As president of the National Organization of Parents of Blind Children (NOPBC), Carlton Walker brings rich personal experience and many levels of expertise. In addition to being the parent of a blind daughter, she is an attorney and a teacher of the visually impaired. Here is the address she delivered to launch the NOPBC Conference at the 2021 NFB National Convention.
Hello! I am Carlton—Carlton Anne Cook Walker, but "Carlton" is fine. I am privileged to serve as president of the National Organization of Parents of Blind Children (NOPBC), a proud division of the National Federation of the Blind (NFB). Each year since 1983, the NOPBC has held our annual conference within the annual NFB Convention, and this is the great strength of our conference. As the Parents' Division of the NFB, we have access to the real experts in blindness—blind individuals who marry their formal education and training with their lived experiences. I am a parent of a blind young adult and a certified teacher of blind students, and I have learned and continue to learn so much from blind individuals. I am also greatly enriched by the wisdom and support I get from other parents of blind children. Truly, all of us are smarter than any of us!
In the NOPBC we welcome everyone: parents, families, educators, and allies of blind children. All of us are united in our mission:
We welcome you to our conference and to the NFB Convention. Please know that you are welcome to participate in all facets of the convention, including the general sessions and the banquet on Saturday night. We encourage you to avail yourself of the many and varied opportunities this week, both in the NOPBC Conference and in the rest of the NFB Convention.
We've had quite an interesting ride since the spring of 2020. When health concerns closed schools, the impact on students varied greatly. Blind and low-vision students who were receiving the instruction, materials, technology, and support they needed in the regular classroom had a fairly easy transition to distance instruction. They had the skills to function fully at or above grade level academically, their materials were fully accessible and available before needed in class, and they had twenty-four-hour access to the technology necessary for online instruction (and all of the software used by the school was fully accessible). Unfortunately, this easy transition was rare for our students, highlighting the fact that, even before the pandemic, few were receiving the free appropriate public education to which they are entitled. Far too many of our families struggled through education in the pandemic. With at-home instruction, parents could monitor what was—and what was not—being provided to their children.
During the past year the NOPBC and the NFB supported families through programs such as the Early Childhood Initiative and our Third Thursday Webinars. In addition, students received instruction in Braille and nonvisual techniques via the NFB BELL® Academy and exposure to science concepts through the NFB STEM programs. Families were offered resources and advocacy through NFB Distance Learning Resources, and recordings of sessions at our 2020 conference, including two dedicated to IEP advocacy.
Now we are more than halfway through 2021. This NFB convention is our eighty-first, and 2021 marks my sixteenth year in the NFB and the NOPBC. Eighty-one and sixteen are pretty special numbers - they highlight our power of exponential growth. Sixteen is the product when we take the number two to the fourth power—two times two times two times two. If we had chosen linear growth (by simply adding two, four times), we get only eight—half as much. Now let's look at three. In the linear growth model, four threes add up to twelve, a respectable number. But when we create the environment for exponential growth, raising three to the fourth power, we get eighty-one—an increase of 675 percent!
It's no coincidence that exponents are verbalized with the words "to the power of." Whether in terms of medicine or science, exponential growth describes spectacular increases that keep getting larger and more powerful over time. I've always been a math nerd, and I've always loved science. Later in life I became an attorney, a wife, and the parent of a blind child. Later still I became a certified teacher of blind/low-vision students and an advocate for the educational and civil rights of individuals with disabilities. But the math nerd and science fan in me remain.
Parenting is hard. Your child comes into your life without an instruction book or customer support services. There are no warranties and no returns. And parenting, alone, is the easy part. Add in differences such as adoption, family structures, or one or more disabilities, and the job gets even harder. Throw in a low-incidence disability such as blindness, and parenting can seem overwhelming. I know it was for me.
Before Anna was born, I had held a baby only once—for about half a minute. In the first year, Anna Catherine had many health issues, with surgeries and hospitalizations. We were told more than once that she would not live long enough to become a toddler—the memory of that time still haunts me! Those experts were so sure, but we knew something was missing. After we got to a new hospital where the doctors made their own assessments, Anna recovered and began to thrive. Just after Anna's second birthday, we learned that those early medical issues prevented Anna's macula from developing and caused retinal scarring. We found out that our child was "legally blind." She had no central vision in either eye, and she had peripheral vision with blind spots.
At that time Stephen and I actually were not too overwhelmed by this news. After all, Anna Catherine seemed to be "managing" well. We had been through much, much worse.
As time wore on, however, things changed. While the vision did not seem to be changing, Anna's ability to "manage" did. We quickly realized that this was very logical—children want to do more as they get older, so "manageable" vision for a two-year-old was insufficient for a preschooler. We found the National Federation of the Blind, and we asked the school to provide Braille and cane travel instruction for our legally blind child.
This is the part of the story where flowers should bloom, birds sing, and Anna Catherine lives happily ever after. But this was real life, not a fairy tale.
Never had I faced such resistance when making a request! These professionals belittled the value of both Braille and cane use. They told us that Anna Catherine was not "blind enough" for either. We were not offended by these rebuffs. We started to document the struggles Anna Catherine faced with doing schoolwork visually (even with enlargement) and with age-appropriate independent travel—and this was in pre-kindergarten. We shared our concerns that vision, alone, was not working for Anna Catherine and that focusing on residual vision hurt her now and left our child unprepared for the future. We were told that children, including those who are legally blind, need to "maximize" their vision. Wait what?
After many months and an independent educational evaluation (IEE) that found "dual media" (print and Braille) instruction to be appropriate, Anna Catherine finally got some Braille instruction and a few worksheets in Braille each month. However, consistent access to Braille materials, quality Braille instruction, and competent cane travel instruction remained elusive for years.
Why did this happen? Federal law actually requires both Braille use and Braille instruction for all children who have been determined as eligible for an individualized education program (IEP) under the disability classified as "visual impairment, including blindness" unless the IEP team determines (based on specific data) that Braille use and instruction are inappropriate for the child. In other words, blind/low-vision children with IEPs are presumed to need and be entitled to instruction in Braille.
Why are so few blind and low-vision children receiving instruction in this critical skill? Why aren't our children receiving cane travel instruction? Why aren't they receiving instruction in the use of assistive technology at home and at school? To a great extent, it's because educators want to maximize vision. When they maximize vision, they minimize instruction in the critical skills our children need to engage in age-appropriate activities in school, at home, and in their communities - skills such as Braille, cane travel, and accessible assistive technology. And the children are the ones who suffer.
Over the years I have seen this happen again and again and again. I joined the NFB and the NOPBC, and I met many parents and blind adults who served, and continue to serve, as mentors for me and our family. I learned that children like mine (having some level of functional vision) benefit from blindness skills; with blindness skills, they can choose when to use their vision and when to use nonvisual skills. When children learn blindness skills, we empower them to maximize themselves.
During my time teaching in the schools of south-central Pennsylvania, I found—much to my disappointment—that the ill-conceived pressure to "maximize vision" was only the tip of the iceberg. I discovered that skills aren't the only things being minimized. Time and time again I encountered individuals unwilling to provide our children equitable opportunities—because when we maximize vision, we minimize all services to children, including students who are completely blind. In my first year of teaching, one of my students had a teacher who refused to provide "pop quiz" materials in time for Brailling, so the student was forced to take those assessments orally. She was the only student who did not have the opportunity to read and re-read her quiz and to write (and rewrite) her answers. After many weeks of complaints, the principal finally stepped in and told the teacher that all materials needed to be provided for me to Braille for our student. The next day, yet another "pop quiz" was unavailable for Brailling. I alerted the principal, and he ordered that all the students in the class take the quiz orally. My student beamed—and scored more than twenty points higher than any of her peers! That day all of us, including the regular education teacher, learned a good lesson about the importance of accessibility and advocacy.
Another time, a science teacher came to me fussing about a student who had lost a worksheet. I thanked her for the information and then asked whether her other seventh-grade students ever lost worksheets. She paused and then had an "aha" moment. She pointed to shelves along the wall in her room where extra print copies of the worksheets were always available for her typically sighted students.
As a parent, as a teacher, and as an advocate, I have seen many, many instances in which our children are not provided the accessible assistive technology or instruction they need. While sighted children have access to iPads in preschool, many Braille readers must wait years until they are allowed to use refreshable Braille displays—the equivalent of a screen for sighted children. And while sighted children use touch screens and computer mice to navigate devices, years pass before our children have access to and instruction in using screen readers and touch typing. Without these tools our children are denied the opportunity to use and become proficient in the technology they need, both now and in the future.
Without a doubt, though, the absolute worst effect of maximizing vision is the resulting minimization of children's dreams. Regularly, blind/low-vision children as young as three and four are told that they need to be realistic in their dreams. While their sighted peers are encouraged to dream of becoming scientists, law enforcement officers, famous actors, sports stars, doctors, lawyers, teachers, and presidents, our blind/low-vision children are told these goals are "not realistic" for them. Never mind that they are not realistic for most children, blind or sighted. Never mind that there are blind individuals who hold PhDs in science and who work in STEM fields, blind individuals who work for the FBI and other law enforcement agencies, blind individuals who are professional actors and who are professional athletes. Blind individuals are doctors, lawyers, and teachers. Blind people have served as US Supreme Court law clerks, state governors, and state supreme court justices. Many of these individuals are totally blind. They are not maximizing vision; they are maximizing their lives. These great role models for our children prove that typical vision is not needed for success, but self-confidence is. Self-confidence begins with dreams—dreams of what one can experience, of what one can do, of what one can be.
When we stop focusing on visual function, we can focus on children. We can focus on the skills that allow our children to read, write, do math, surf the internet, participate in P.E., study art and music, dance, walk, run, and play. They can live their lives as independently as their sighted peers do.
Here's an example of a way to maximize dreams: ask your child, "What if you had a magic lamp?" Begin the conversation without limits (disabilities, finances, etc.). Probe into their interests and their skills. It may be difficult for you and for your child. But try. This and other conversations are vital. In these conversations, we get to know our children in new ways. We will help counter the negative messages our children may have received, and we'll create room for more positive messages. Exercises like this create an environment in which our children can better shape and realize their dreams.
When we maximize vision, the best we can hope for is linear growth. When we maximize skills, opportunities, and dreams, exponential growth is possible. But this is not enough. Exponential growth is most powerful when we start with a bigger number. One raised to any power is just one. But when we seek out blindness experts and blindness education professionals, our starting number increases to 2, 3, 4, and even higher. Now we can shoot past one and reach 16, 81, 256, even more!
Please let us in the NOPBC and the NFB join you and your child on this journey. Together we will work to teach our children alternative techniques to help them maximize their abilities. We will advocate for the equitable access and opportunities they deserve and to which they are legally entitled. We will listen to their dreams and work together to help them become reality. In other words, we will empower our children by maximizing their skills, opportunities, and dreams.
Is this easy? No. Then again, nothing worthwhile ever is. Let's go!