Volume 43, Number 3 Summer 2024
A magazine for parents and teachers of blind children published by
the American Action Fund for Blind Children and Adults in partnership
with the National Organization of Parents of Blind Children.
Deborah Kent Stein, Editor
ISSN-0883-3419
Copyright © 2024 American Action Fund for Blind Children and Adults
For more information
about blindness and children contact:
National Organization of Parents of Blind Children
200 East Wells Street at Jernigan Place, Baltimore, MD 21230 • 410-659-9314
https://nfb.org/nopbc • [email protected] • [email protected]
TEACHING AND LEARNING
Benefits of Orientation and Mobility
by Merry-Noel Chamberlain
How Non-Primary Languages Can Enhance Cane Travel Instruction
by Justin Salisbury
Katie Can Read!
by Kathy Pratt
CAREERS
You Could Be a Unicorn! Consider Becoming a Teacher of Blind Students or an Orientation and Mobility Instructor
by Janna Kowalik
To Equalize the World of Audio, Let's Add Accessibility to the Mix
by Michelle Guadalupe Felix Garcia
NEW DIRECTIONS
Cerebral/Cortical Visual Impairment: A Parent-Child Perspective
by Katie Lane-Karnas and Mae Lane-Karnas
To See and Not to See: Helping Students with Cerebral/Cortical Visual Impairment Get the Resources They Need
by Stephanie Duesing
The Use of Body-tactile Signals for Children with Visual Impairments and Additional Disabilities
by Flavia Daniela dos Santos Moreira
CREATIVE ENDEAVORS
The Disorienting Journey of the Eye
by Stephen Proski
Braille Boy
by ZuZu Sampson
Reviewed by Deborah Kent Stein
ADVOCACY AND ACCESSIBILITY
Will the US Supreme Court's Loper Bright Decision Burn Blind Students?
by Carlton Anne Cook Walker
The Digital Divide: Investigating Access Barriers Encountered by Blind People in Their Day-to-Day Lives
by Arielle Silverman
Fostering Inclusion: Blindness Doesn't Define Us
by Cricket Bidleman and Karen Smith
NEWS
Introducing a STEM Learning Toolkit for Parents of Blind Children
Empowering Young Minds with Early Childhood Initiatives
Announcements
In Memoriam: Remembering Penny Duffy
by Cassie McKinney
Are you the parent of a blind/low-vision child? Don’t know where to turn? Have you ever wondered what your child will be capable of when he or she grows up? Are you concerned that your child’s future will be limited by blindness or low vision? Do you have questions about how to parent a blind child? We are here for you.
Founded in 1983, the National Organization of Parents of Blind Children (NOPBC), a proud division of the National Federation of the Blind (NFB), is a membership organization of families, friends, and educators of blind children. We have thousands of members in all fifty states plus Washington, DC, and Puerto Rico.
We have a very inclusive definition of blindness which includes children who have some usable vision. Instead of focusing on what the child can or cannot see, we focus on the child and what she or he wants to be.
NOPBC is for families, educators, and friends of blind children, including those who have some usable vision. We welcome all families of blind children, and many of our children have both blindness and other disabilities.
We help families and blind children themselves maximize the child’s abilities and opportunities; we hold high expectations for all of our children, regardless of any additional disabilities they may have.
As a division of the National Federation of the Blind (NFB), the largest and most influential organization of blind people in the world, the NOPBC is well informed about the societal, legislative, and technological issues that affect blind people. We enjoy the resources, support, and expertise of fifty thousand blind people who can serve as mentors and role models for us and our children. When we as parents join the NOPBC, our children belong to the Federation family.
The NOPBC:
Most states have an NOPBC affiliate chapter. You can find your state chapter at http://www.nopbc.org. If your state does not have a chapter and you would like to start one, please contact us. We may be able to offer training and other assistance to start a state NOPBC chapter.
We have been where you are, and we want to support you and your blind child. We know that blindness does not define your child's future. We can connect you with other families and blind adults who can serve as positive mentors and role models. They can teach you the attitudes and techniques that will enable your child to become independent and to succeed in life.
The NOPBC offers hope, encouragement, information, and resources for parents, families, and educators of blind children. NOPBC provides:
We offer a wide variety of programs, activities, and training to families, children, and youth. One of our most exciting activities is our annual conference. Every year since it was established, the NOPBC has conducted an annual conference for parents and teachers of blind children as part of the national convention of the NFB. This conference has grown to include five exciting days of workshops, training sessions, activities for all family members, including sighted siblings, and countless opportunities to meet blind adults and other families and children from around the country.
Contact Us:
National Organization of Parents of Blind Children
[email protected]
www.nopbc.org
by Merry-Noel Chamberlain
From the Editor: Merry-Noel Chamberlain is an Orientation and Mobility (O&M) instructor based in Nebraska. Her latest book, Structured Discovery Cane Travel Approach to Orientation and Mobility Concepts, is available on Amazon.com.
"Ask virtually any newly blind or visually-impaired person what's the most difficult thing to deal with, and the response is nearly always the same—the loss of independence. The cornerstone of independence for most people is the ability to get around—to travel to work, school, the grocery store, or anywhere else they want to go without relying on someone else." (Iowa Department for the Blind: "Opening Doors to Opportunity," nd., brochure).
The public often has the belief expressed in the brochure quoted above, that blindness is synonymous with loss of independence. However, this loss does not need to be the case, provided the blind individual receives Orientation and Mobility (O&M) training. Parents and educators alike sometimes question the benefits of O&M for students. With O&M training, the average blind student will be able to walk about independently, and take a bus, taxi, train, or plane, with the long white cane as their mobility tool. For individuals who are blind, the long white cane is the symbol of independence and competence.
Before we move forward, we need to identify the terms orientation and mobility. According to Sarid (2012), orientation involves two related concepts: (1) mental mapping knowledge of one's specific location relative to the world (i.e., positioning and awareness) and (2) awareness knowledge that dictates a direction leading to targeted or desired destinations. Jacobson (1993) states that "mobility is the ability to facilitate any means of movement (i.e., walking, crawling, scooting, or using aids such as wheelchairs or crutches." Basically, orientation is having the ability to form a mental map of the current environment, while mobility is the ability to maneuver efficiently, safely, and successfully from one location to another targeted location (Pogrund & Griffin-Shirley, 2018).
Orientation and Mobility is considered a related service for all students with visual impairments from birth through twenty-one years of age. Instructors of O&M help students develop mental mapping skills whereby they can develop a comprehension of where they are and where their targeted location is within a myriad of environments. For infants who may not yet be walking, O&M instructors begin by giving them infant-sized canes to play with. Through play or exploration, infants will learn that the cane can provide auditory and tactile information. As they grow, O&M instructors help them maneuver about by using the long white cane as their primary mobility tool. Movement is vitally important. It increases blood flow to the brain whereby precious nutrients enable the brain to complete its job (McGregor, 2021). As the toddler maneuvers about with the cane, their self-confidence and sense of well-being increase. "O&M skills enable children to safely explore and interact with the world, including the home, school, and community" (TSBVI and PPAG, nd, par. 4).
O&M instructors using Structured Discovery create lessons by utilizing individualized, student-centered experiences within the student's environment. Keep in mind that student-centered learning is an instructional method that focuses on each student's interests, making the lessons more impactful and meaningful. Therefore, student-centered learning increases the student's attention and knowledge retention.
Orientation and Mobility skills help reduce isolation by promoting skills that will help students interact with others (i.e., family, friends, teachers, future employers) (TSBVI and PP, nd). This meaningful instruction is transformational, extending from the lesson setting to real-life situations.
As the student's O&M skills develop, often their O&M instructors will introduce them to unfamiliar environments. In this way instructors help students build their problem-solving skills. If students can independently problem-solve when their instructors are around, they surely will be able to problem-solve when instructors are not present. Developing problem-solving skills enables students to travel independently.
Some O&M instructors encourage students to receive instruction while wearing sleepshades, also known as learning shades. Sleepshade instruction is not intended to help students adjust to possible decreased vision. Rather, it is used to help students develop the self-confidence to travel independently regardless of lighting conditions. If a student depends on their limited, unreliable vision in well-lighted environments, that student may be rendered helpless in conditions with low lighting, such as darkened rooms (i.e., during classroom educational films or in movie theaters), shaded areas (i.e., tree shade, building shade), in the evening (dusk), or after nightfall.
Since the activities and lessons used for O&M instruction are individualized and hands-on, there is no set guideline or curriculum that fits every student. Here is a short list of concepts that students may focus on during O&M instruction.
As mentioned in the previous section, Orientation and Mobility reduces isolation by promoting skills that will help students to interact with others (i.e., family, friends, teachers, and future employers (TSBVI and PPAG, nd). Many students with visual impairments struggle to initiate contact with the public for assistance or to meet people who could become friends or acquaintances. At the same time, the public may not know how to initiate contact with a person who is blind or has low vision. When students are working on their O&M skills, they have many opportunities to interact with the public. O&M instructors help students overcome their fears of initiating contact with the public or responding to others who initiate conversations with them. Older students quickly learn that they are the instructors when it comes to educating the public about blindness. This realization occurs:
Leffew (2021) encourages people to announce themselves "when approaching a friend who is blind" (p. 1). This announcement can simply be "Hi, Mickey, it's Mini" or "Hey Lewis, it's Clark from Social Studies." Students may need to inform their friends to do this until their voices are recognizable. Some members of the public think it is fun to go up to a blind person and ask, "Do you know who this is?" However, most students find this rather annoying. Simply put, this type of questioning holds two components.
O&M training places students in real-life situations that may involve interacting with Customer Service. This experience helps demonstrate to the public that blind individuals can, in fact, shop for their own groceries. Older O&M students may receive training at local shops such as Walgreens or Target. Students learn to access Customer Service to help locate their desired items. At first, the O&M instructor will role model what the student can expect from the Customer Service assistant. Then the student will actually utilize a Customer Service staff member rather than a paid assistant. This experience helps the student become an independent shopper as an adult.
Students become the teachers when they work with Customer Service assistants. Keep in mind that Customer Service assistance is a free service. Therefore, blind individuals need not pay for a reader or assistant to accompany them. It is recommended that individuals needing customer service assistance avoid shopping during peak hours.
After training, students can help their families with grocery shopping. They may also shop independently for gifts, birthday cards, clothing, or electronics. The possibilities are endless!
My daughter is blind, and after she learned shopping skills, sometimes we divided the grocery list to get our shopping done more quickly. As she got older, we would drop our daughter off at the door of the supermarket and she would do her own shopping.
In O&M training students learn the following steps:
O&M training places students in real-life situations that sometimes involve interacting with cashiers. In this way blind individuals have a chance to demonstrate to the public that they can identify currency independently. Identification of currency need not be complicated. Blind people have used simple tricks to identify coins and paper money for years.
Coins can easily be distinguished by their size, thickness, and edges. Dimes are the smallest US coins, and they have rough edges. Pennies are slightly larger than dimes and have smooth edges. The next largest coin is the nickel. It also has a smooth edge, but it is thicker than the penny. Finally, the quarter is the largest coin, and it has rough edges. Some people may have trouble feeling the rough edge with their finger. A fingernail may be used to scratch the edge of the coin and help determine whether the coin has a rough edge or a smooth one.
There is no standard way for blind people to fold and organize paper money. Although one system is recommended here, students can develop the methods that suit them best. On the other hand, students may like this technique of money identification, and it is perfectly okay for them to use it.
For one-dollar bills, fold in half.
For five-dollar bills, fold in half and in half again, creating a fat five.
For ten-dollar bills, fold in half and in half the long way, creating a thin ten.
For twenty-dollar bills, fold in half and then in half corner to corner, creating triangle twenty.
For fifty-dollar bills, place in a separate compartment of the wallet.
Jacobson, W. H. (1993). The art and science of teaching orientation and mobility to persons with visual impairments. New York, NY: American Foundation for the Blind.
McGregor, G. (2021). How exercise affects the brain. Retrieved from: https://lifesciences.byu.edu/how-exercise-affects-your-brain
Pogrund, R. L., & Griffin-Shirley, N. (2018). Partners in O&M: Supporting Orientation and Mobility for Students Who Are Visually Impaired. New York, NY: American Foundation for the Blind Press.
Sarid, A. (2012). "Between Thick and Thin: Responding to the Crisis of Moral Education." Journal of Moral Education, 41 (2), 245-260.
TSBVI, PPAG. (n.d.). "Benefits of Orientation and Mobility." Retrieved from: https://www.tsbvi.edu/wp-content/uploads/assets/documents/statewide-resources/om-benefits.pdf
by Justin Mark Hideaki Salisbury
From the Editor: Justin Salisbury is a graduate student and graduate teaching assistant in the Department of Rehabilitation Psychology and Special Education at the University of Wisconsin/Madison. He works to bring the knowledge of the National Federation of the Blind into research, policy, and university training spaces.
The prevailing or dominant culture teaches many Americans to fear or feel uncomfortable around languages other than English. Sometimes members of the dominant culture fear losing control when faced with communication that they cannot understand. In recent centuries, English has become the dominant or primary language of North America and the Hawaiian Islands. English is the primary language of instruction in most schools in the United States. In this article I will discuss how non-primary languages can be an asset in cane travel instruction and, more broadly, in adjustment-to-blindness training.
As a person of mixed race, I feel an inherent commitment to embrace languages and cultures beyond the primary or dominant ones in my teaching. We are not here to assimilate people by stripping them of their home cultures. We aim to facilitate an emotional adjustment to blindness, where students come to think of themselves as first-class citizens. We try to help them become more confident and shed any shame that they may feel about their blindness. The relationships between students and instructors are important parts of this process, so support for using a non-primary language for instruction can be helpful in the student's emotional adjustment. I cannot think of a time when suppressing a student's identity would be productive for their emotional adjustment.
In this article, I will discuss the use of what I am calling "non-primary languages of instruction." I could not find a technical term for this, so I am attempting to coin my own term to communicate what I want to convey. Even when I consulted with professors who specialize in multilingual education, I came up short on finding a term for this concept. Consider non-primary languages of instruction to mean "languages other than the primary language of instruction."
For my first full-time job after graduate school, I taught cane travel at a state-operated training center in Honolulu, Hawaií. Hawaií is a beautiful mixture of many Asian and Pacific Island cultures. This cultural blending has given rise to some really cool innovations, such as mixed martial arts. Honolulu has neighborhoods with varieties of primary languages, and in some neighborhoods speaking English is very uncommon. Honolulu helped me become more comfortable in places where I could not speak the primary language and appreciate the opportunities created by non-primary languages.
During cane travel lessons instructors commonly go out in the community and have interactions with bystanders. If a non-primary language is spoken by everyone, it may be useful to communicate a concept that is best expressed in that language. Of course, when only one person speaks the non-primary language, they cannot use it to communicate with anyone else.
Let us consider situations in which two of the three people involved (bystander, instructor, student) speak the non-primary language and the other person does not.
Consider a scenario where I am teaching a student who speaks Chuukese, a language from Micronesia. We are in a community where Chuukese is widely spoken. I, the instructor, don't speak a word of Chuukese. I can communicate with my student in English, and English is the primary language of instruction at our training center. The student wants to ask someone for directions, which is appropriate for the lesson. The student finds a bystander and gets their attention. From the person's accent in responding, the student quickly realizes that the bystander speaks Chuukese. The bystander seems to have a hard time giving directions in English, so the student switches to Chuukese to communicate. The student gets directions, and we move on with the lesson.
In that situation, the student must be able to take on a slightly bigger role than would be required if I, the instructor, spoke Chuukese, too. They must be able to use their discretion in knowing what to ask, how to ask it, and what kinds of answers will provide sufficient information. Depending on the student's level and what we want to accomplish that day, I may ask them to repeat the directions to me or recount the conversation they had with the bystander, translating it back into a language I speak. We may then discuss parts of the directions that seem to need greater clarity. This exercise can show me how the student thinks, and I also may just want to know where we are about to go. On the other hand, if I do not ask, I show the student that I trust their judgment. Even if I do not expect them to understand directions at this point in training, it may be valuable for me to allow them the possibility of making mistakes. Mistakes create learning opportunities as well. If I do not trust my student to be honest with me about what they discussed with the bystander, then we have bigger problems than needing directions! A trusting relationship between student and instructor is always important.
Consider a different scenario. An instructor and bystander speak the non-primary language, but the student does not. Sometimes it is helpful for the instructor to gather information about the environment without the student knowing what is going on. If I have an objective for the student for that day, and if I do not have complete information about the environment, I may want to ask someone about a nearby construction site or a place that might sell ice cream for a surprise treat. It also can be less distracting for the student if they don't understand what I'm saying, especially if it's not relevant to what the student is doing. If I want to duck out to grab a cup of coffee from a 7-Eleven, the student doesn't need to be bothered with me asking someone about directions to the store.
When bystanders jump in to offer unwanted help, I do not advocate for instructors to use non-primary languages to intervene. Regardless of the language, students need to learn how to decline unwanted help. On the other hand, we do not want to allow students to become so blizzarded with unwanted help that they lose track of the lesson and shut down. If I have to say something to the bystanders, I will debrief with the student about that when it's appropriate. We debrief at the end of every lesson, so that space is built into our structure.
I once had a student who could not manage to walk down a street without engaging in side conversations with other people. He had been a successful used-car salesman before going blind, and he loved meeting people and asking them to tell him what was around him. This is a good skill, but he needed to learn to walk on his own without talking to everyone. He only spoke English. To help him focus differently, one of my colleagues recommended that I plan many of his lessons in the Chinatown neighborhood of Honolulu, where it would be much harder for him to talk to other people. It was a brilliant idea, and it worked. He quickly focused on walking according to the directions I had given him, and he advanced as a traveler as a result.
Consider a scenario where the student and instructor speak the non-primary language, but the bystander does not. This situation allows the student and instructor to communicate without the bystander understanding and attempting to intervene in the conversation. Sometimes well-meaning bystanders will attempt to participate in the interactions between instructor and student, as if they know how the cane travel instructor is supposed to perform. To avoid this interference, the student and instructor may switch to their non-primary language.
In addition, the student and instructor can discuss interactions with bystanders without them understanding the conversation; therefore, the student is responsible for interacting with the bystander while the instructor is there only to coach the student. For example, suppose the student asks for directions from a bystander on the street and their instructor knows that the bystander is giving the student flawed information. The instructor can speak to the student in their shared non-primary language about the concerns with what the bystander is saying and guide the student in how to speak to the bystander in the primary language.
I hope that the main takeaway from these scenarios is a broader idea that asymmetry in languages can be an asset to instruction, not a deficit. If you treat it as a deficit, it will definitely become a deficit. If you treat it as an asset, it can become an asset. Blind students are constantly told that they have deficits, but non-primary languages offer a clear opportunity as assets. Let us find creative ways to embrace non-primary languages when they present themselves to us. It may take practice, and you may not get it right the first time. Everything in a student's experience is part of their training; when we open up our instruction, we open up the student's world.
by Kathy Pratt
From the Editor: I met Kathy Pratt and her family at the NFB National Convention in Houston in 2023. When Kathy told me how she and her husband fought to get Braille instruction and other opportunities for their daughter, I realized they had an important story to share with the readers of Future Reflections. It's a story of persistence, resourcefulness, and parents' unshakable belief in their child's potential to lead a full and active life. Here it is:
Our daughter Katie is considering entering a program to study landscape management, or maybe she'd like to learn floral design. She's also thinking about becoming a sommelier, an expert in wines and wine culture. She plays the guitar and the cello. She hopes to undergo blindness skills training at the Louisiana Center for the Blind (LCB) in Ruston, Louisiana, before she starts training for her chosen career, whatever that may be.
My husband and I are full of hope when we look toward Katie's future, but it hasn't been an easy journey. We have faced daunting challenges all along the way, but always we have believed in Katie and her capacity to learn.
Katie was a premature baby, born at just twenty-five weeks gestation. In the neonatal intensive care unit (NICU) she was seen by an ophthalmologist and a retina specialist, but neither of them had experience treating a child with retinopathy of prematurity (ROP). The retina specialist treated Katie as though she had diabetic retinopathy, a very different condition with different treatment protocols. While she was in the hospital, we were told that Katie would have good central vision, though her peripheral vision would be compromised. The staff assured us that Katie would be able to read standard print, drive a car, and live as a fully sighted person.
Once Katie came home from the hospital, we took her to an eye specialist who sent her for immediate surgery. After the operation we had the good fortune to connect with the pediatric ophthalmologist who wrote the standards of treatment for ROP. She ended up following Katie's case for many years.
Katie had twelve eye surgeries during her first year of life. After several of these surgeries she had to be kept lying face down in order for her eyes to heal. In the end she retained some sight in one eye, but we were warned that it might not last. She would be able to read very large print, but she could definitely benefit from Braille instruction.
Vision loss wasn't the only challenge Katie faced. She had serious speech delays. She also was unable to handle solid food, the result of spending so much of her first year lying on her stomach. She ate everything the rest of the family ate, but first we put her portion in the blender.
When she was three years old Katie entered a special-education preschool program through our local school district. We thought she would spend two years there and head to kindergarten. However, after her second year, the preschool team insisted that Katie wasn't ready to move on. In the end Katie was in preschool for four years.
From the beginning my husband and I asked that Katie be given Braille instruction. We sensed that her TVI (teacher of the visually impaired) was very reluctant; she kept telling us that Braille would be too difficult for Katie to learn. I vividly remember one day when Katie's TVI met with us at my husband's office. She arrived with two enormous Braille volumes in her arms. As she thumped the books down on my husband's desk she demanded, "Is this really what you want to burden your daughter with?" We assured her that yes, we did want our daughter to learn Braille, and we didn't consider it a burden.
Katie's TVI told us that she would start Braille instruction by teaching Katie to recognize ten Braille letters. When it came time for us to evaluate Katie's progress, however, we learned that the TVI had chosen to begin by teaching her the Braille letters b and k. After months of lessons, Katie still couldn't tell b and k apart.
To anyone who knows Braille, confusion between these two letters is not surprising. B and k each consist of two dots arranged vertically. The dots in the letter b (Braille dots 1 and 2) are closer together than the dots that form the letter k (dots 1 and 3). Most teachers working with a beginner focus on letters that are more easily distinguished. The TVI’s decision to start with b and k was a recipe for failure. Yet she pointed to Katie’s struggle as proof that she couldn't learn Braille. If we insisted on Braille instruction, she told us she would try to teach Katie two Braille letters per year.
During Katie's fourth year in preschool, we connected with a wonderful consultant named Donna McNear. Donna is a TVI, and orientation and mobility specialist based in Minnesota. She has extensive expertise working with blind children who have additional disabilities. Donna helped us move Katie into kindergarten and begin Braille instruction.
In kindergarten Katie had a new TVI who helped her build her Braille skills. While she made progress with her Braille reading, print was Katie’s preferred reading medium. By the second half of kindergarten, she was taking her spelling tests in both print and Braille. Typically, she earned grades of ninety to one hundred on her print tests, and eighty to ninety on the Braille version.
Katie continued to receive Braille instruction, but she did not enjoy reading Braille as much as she liked writing it. Large print was her preferred reading medium. With letters enlarged to a font of thirty-six, eventually she was able to read sixty-five words per minute.
When a child is between the ages of nine and twelve, the eyes undergo a second period of growth. This growth can cause retinal detachment when the retinas have suffered previous damage. When Katie was eleven, her fragile retina detached. Four surgeries within a month failed to reattach it, and Katie became totally blind.
That same year, Donna McNear arranged for us to take Katie to Minnesota to a therapy center for children with special needs. We finally got sound suggestions on helping Katie learn to eat solid food. Today she eats most solid foods without any difficulty.
After she lost her remaining sight, Katie got fully on board with Braille. For the first time in her life, she really wanted to learn to read by touch! We renewed our efforts to get more Braille instruction into her IEP (Individualized Education Plan). Each year we worked with great diligence to build an educational team that could meet Katie's learning needs. It was a challenge sometimes to get accurate information into her IEP'S and three-year evaluations, to focus on what she could do and not to emphasize the things she couldn't do yet.
Fortunately, we've had a couple of wonderful TVIs over the years, and some of Katie's classroom teachers have been terrific. She's also had some great speech therapists, occupational therapists, and physical therapists, as well as school administrators who went above and beyond to make sure she got the education she deserved. It really has taken the proverbial village to educate our daughter!
Katie doesn't learn quickly, but once she masters new information or a new skill, she retains it. Recently she passed the Texas history requirement for high school students. She had a great teacher who was careful to explain the material in ways Katie could understand. She remembered everything she learned in his class, and she passed the exam.
Katie's skills are very scattered. She has some areas of strength and some areas where she continues to struggle. We keep plugging away, and she keeps learning. One of our doctors commented, "It doesn't matter when she learns that two plus three equals five. What matters is that she learns two plus three equals five."
Katie graduated from high school with a certificate of completion, and she is now in a postsecondary program at Texas School for the Blind and Visually Impaired (TSBVI) to build her daily living and other skills. She and I share an apartment in Austin so she can be close to the school campus and attend as a day student. This coming year she'll live in the dorm.
Today Katie has many friends at TSBVI, and spending time with them has helped improve her language skills. When she and her friends are together, Katie is the one who tries to get people to laugh. She pays attention to the things people like, and that gives her topics to talk about.
Katie has been accepted into WACO (Work and College Opportunities) and HOPS (Horticultural Options in Plant Sciences), two postsecondary programs for students with special needs sponsored by Texas A&M University. These programs, which Katie can attend sequentially, will allow her to explore jobs in landscape management, floral design, and other fields that appeal to her. Like other people her age, Katie is eager to explore the possibilities that await her.
We're profoundly grateful for all of the help and encouragement we've received through the years from teachers, therapists, friends, conference organizers, and our support system in the NFB. Most of all, we're proud of Katie herself. Though she has encountered enormous hurdles, Katie has shown us again and again that she is determined and resilient. When she makes up her mind to do something, nothing will stop her.
by Janna Kowalik
From the Editor: I hear the story from families all over the country: "My child needs Braille instruction!" "My child needs to learn access technology!" "We don't have anyone to teach my child to use the long white cane." The need is dire, especially in rural areas. In this article, Janna Kowalik writes about the joys and benefits of working in the field of blindness education. Janna is a teacher of the visually impaired (TVI) and orientation and mobility instructor based in Sacramento, California. And—full disclosure!—she's also my daughter.
The world of special education is filled with acronyms. If you are reading this publication, you already may know the significance of the letters TVI (teacher of the visually impaired) and O&M (orientation and mobility). However, you may not realize the high need for professionals in these fields. The scarcity of certified TVIs and O&M instructors has a negative impact on students across the country. I have worked as a TVI and O&M instructor for the past twelve years, and I love my career. So why are professionals in these fields so scarce?
I believe that lack of awareness is a key piece of the puzzle. In this article I hope to raise awareness of the job duties performed by TVIs and O&M instructors and to share the many benefits of working in these fields. Perhaps these words will reach someone who is choosing their first career, someone considering a career change, or someone who knows somebody who would make an amazing teacher but isn't sure where to start.
A teacher of students with visual impairments (known in some training programs as a teacher of blind students, or TBS) is a certified teacher who has received either a bachelor’s or master’s degree in teaching with an endorsement in visual impairments and blindness. TVIs are trained to teach the Expanded Core Curriculum (ECC). Blind and low-vision students need instruction in concepts and skills that will allow them to compensate for the decreased access to information that results from their visual impairment.
These concepts and skills fall into nine areas under the Expanded Core Curriculum: assistive technology, career education, compensatory skills (including Braille), independent living skills, orientation and mobility, recreation and leisure, self-determination, sensory efficiency, and social interaction skills. Within each of these areas, TVIs address the aspects of the ECC that relate to a student's visual impairment. For example, a TVI teaching social interaction skills might teach a student to hold their head up and turn toward the person speaking to them. Assistive technology within the ECC includes the use of screen magnification, screen-reading software, and refreshable Braille displays. A TVI teaching sensory efficiency skills might work on the use of tactile discrimination to complete daily tasks or on using visual scanning to locate a desired item in an array.
Orientation and mobility refers to safe and efficient travel skills such as indoor and outdoor wayfinding, mental mapping, and the use of the long white cane. It can only be taught by a certified orientation and mobility specialist.
TVIs and O&M specialists are often itinerant, traveling from school to school within a school district or throughout multiple districts. Some even travel by plane or helicopter to reach students who live in remote areas! Others work in resource rooms or at residential schools.
Many districts in my area have unfilled TVI and O&M positions. In fact, some of these positions have remained open for a year or more. I live in an urban area, where the likelihood of filling a TVI or O&M position is relatively high. In rural areas there may not be a qualified TVI or O&M instructor within one hundred miles of a given school district.
The nation currently faces a teacher shortage in all areas of pre-K-12 education. Districts are struggling to find and retain teachers in every discipline. However, the scarcity of TVIs and O&M instructors is nothing new. When I entered my graduate program in 2010, I was assured that my employment post-graduation was all but guaranteed, especially if I were willing to move to a less urban location. In fact, my graduate-school tuition was fully covered by a grant aimed at bringing more professionals into the field. I have heard employers refer to TVIs and O&M instructors as "unicorns" because we are so scarce we might as well be mythical creatures!
The need for qualified TVIs and O&M instructors has been dire for decades. As long as positions remain unfilled, students will not have access to vital areas of the expanded core curriculum, instruction to which they are entitled under IDEA (the Individuals with Disabilities Education Act).
There are many benefits to working as a TVI or O&M instructor. For starters, many universities offer significant grant-funded tuition assistance for those enrolled in certification programs. Such assistance makes studying to become a TVI or O&M instructor more affordable than the pursuit of other disciplines. In addition, opportunities exist to work and be paid as a TVI intern while completing a certification program. Some districts unable to fill positions with certified TVIs are willing to employ students who are enrolled in a certification program. Due to the high number of open positions, certified TVIs and O&M instructors have the benefit of a less stressful job hunt. Someone entering the field will likely never have to compete against a pool of fifty other applicants for a job!
Then there are the many benefits of the job itself. Most TVI and O&M positions are itinerant, meaning that instructors travel from school to school and often town to town throughout the day. For this reason we enjoy a great deal more flexibility than typical classroom teachers experience. While we must take into account the availability of our students, making every effort to avoid pulling them from academic classes, we are granted the freedom to set our own schedules. For example, if I live close to a certain school, I may be able to start or end my day there to ease my commute. Itinerant TVIs and O&M instructors usually work one-on-one with students, which allows us to get to know our students on a level that is not always possible in a classroom setting. Also we only have to worry about the behavior of one student at a time, so classroom management is not usually an issue.
If you believe variety is the spice of life, you'll love working as an itinerant TVI or O&M instructor. You will have the chance to work with students of all ages, backgrounds, and abilities. I can assure you, boredom is never an issue in these fields! Depending on your students' needs, you will find yourself working on anything from Braille and activities of daily living to self-advocacy skills. You might teach all of the above to one student over the course of a school year. You might be at a kindergarten in the morning, encouraging Braille-letter recognition; and at a high school in the afternoon, helping a student prepare a scholarship application. You might spend time in a special education classroom, helping a student learn to press a switch to choose between two recreational activities. From there you might drop by a middle school to make sure one of your students has access to a large print copy of To Kill a Mockingbird. The variety of tasks within our field ensures that we are always growing as professionals, always adding to the skills in our toolkits.
The final job benefit I will discuss is the one I feel is the most important. As teachers of students with visual impairments or orientation and mobility instructors, we play a critical role in our students' futures. Throughout my years as a TVI/O&M instructor, my colleagues and I have helped students learn Braille and assistive technology, and we have helped them learn to navigate their school campuses without sighted assistance. We've shown students how to access community resources and how to understand the accommodations provided in their IEPs. We've even taught students to send text messages using VoiceOver so they can communicate with their friends like any other teen. If we hadn't been there, that instruction might have been provided piecemeal by overworked teachers in other disciplines—or those skills might never have been taught at all. Blind and low-vision students will always benefit from the contributions of their classroom teachers, other service providers, and supportive family members. However, as TVIs and O&M instructors, our roles are crucial. It is our job to prepare blind and low-vision students to be as independent and capable as possible. A good TVI or O&M instructor can make all the difference between student failure or success.
If you are interested in becoming a TVI or O&M instructor, please look up accredited programs in your area. To get more information about the job, join one of the many Facebook groups for TVIs and O&Ms. And if you are not interested in these careers yourself, please send this article along to anyone you know who might be.
If you are already a TVI or O&M instructor, ask about participating in career days at the high schools in your district. Help teens considering future careers become aware of these job opportunities. Ask about providing an in-service training for students in education courses at your local college. Post about the shortage on social media. Any degree of awareness might make a difference in getting future students access to qualified TVIs and orientation and mobility instructors.
by Michelle Guadalupe Felix Garcia
Reprinted from Braille Monitor, Volume 65, Number 4, April 2024
From the Editor: Many blind people are fascinated by audio technology, and they would love to work in a professional recording studio. However, much of the equipment used in the recording industry depends on dials, displays, and meters that are partly or completely inaccessible. Furthermore, testing to certify sound engineers often is not blind-friendly, creating yet another hurdle. In this article, Michelle Guadalupe Felix Garcia recounts how she used a combination of ingenuity, networking, and sheer determination to become an audio professional.
In his book Drive: The Surprising Truth about What Motivates Us, New York Times' bestselling author Daniel H. Pink offers a strategy for finding our purpose. "Ask yourself two questions," he says. "What gets you up in the morning? And what keeps you up at night?"
The answers for each human being will be as diverse and unique as there are species of wildflowers on this earth. To make our lives rewarding and meaningful, we often have more than one answer to these questions. I am here to share what sparks the energy in my brain and lights the fire within me: Audio.
My alarm rang at 3:15 a.m., and I was not bothered in the slightest. I was about to embark on the exhilarating journey of taking a virtual course offered in England and available to me all the way in Mexico. I had won a scholarship to learn what was necessary to get a certification on Pro Tools, the gold standard in the music industry.
The software called Pro Tools is the norm in recording studios, film post-production facilities, and on-location sound recording all over the world. Taught by Leslie Gaston-Bird, now president of the Audio Engineering Society; and Febe Adedamola, an audio mixer from Nigeria, the course was taught in a two-week intensive format. Held Monday through Friday, the sessions were five hours long, with some breaks in between. On Saturdays each student would take a test on their knowledge. If we passed, we would go on to the next week's round. Upon successful completion of both exams, we would earn the Pro-Tools-Certified official badge from Avid.
The digital audio workstation (DAW) is accessible with the built-in screen reader for MacOS, VoiceOver. But the tests are highly visual in nature because they rely on screenshots of windows and the shapes of tools and buttons. In addition, the tests include questions on zooming capabilities and mouse functions. I had wished to get certified for a long time, but five years ago a fellow blind audio engineer told me to forget it. He said it was going to be too difficult because the materials are not adapted for test takers without eyesight.
How did the goal of doing sound for a living start? I found my dream at a Coldplay concert. After sleepless nights of meticulous strategy-crafting and fifty-two emails aimed at getting a chance to play "Clocks" with my favorite band at the piano, Coldplay invited me in for the adventure of a lifetime. Their legendary status, complemented by their endless humility, shone through. I appreciated everything that they did, including their efforts to speak Spanish and the incredible amount of trust they granted to a stranger and her family, allowing us to watch rehearsal a few feet from the stage. I was able to hug the members and play their official "A Head Full of Dreams" tour piano, decorated with flowers and a multitude of vibrant colors.
I had been into sound for a very long time, since I was thirteen and made my head ache playing with unhealthy amounts of reverb. But this moment marked a before and after. Listening to the pristine, transparent signal of their in-ear monitors; watching the team united as a great big family, working quickly to achieve spectacular results for the audience's enjoyment; and passing by the machine room, feeling the heat emanating from the lighting boards and mixing desks—all of these were reasons that truly consolidated my desire to dedicate my life to sound. I wouldn't like to envision myself doing anything else.
The road wouldn't be all petals and roses, though. On my first week at San Diego State University, pursuing a bachelor's degree in music recording technology and audio design, my live sound reinforcement professor called my parents aside to have a conversation without me. Later he called me as well to declare, "You should change your major."
What was he talking about? The sentence fell like a bomb upon my family and me. We had traveled over three hundred miles to relocate our lives to a country whose language and culture are not our own. My mom had embraced her fears to learn to drive on US freeways, which are different from the highways in Mexico, to support my education. My dad was willing to spend four years living alone, working in Mexico and making six-hour trips to visit us every two weeks. I bet everything on the dream of getting accepted as an international student, trying to get my application noticed among the ninety-three thousand that made up the pile. Now this professor was saying that the career I had chosen is extremely difficult for someone who can see, let alone someone who is blind.
"It's impossible," he stated, not giving me the chance to speak. I had been judged before my first class period, before I turned in any assignments. "Perhaps you should enroll in composition instead," he opined. Interestingly, this would mean I'd take all the other classes except his.
In that moment I had two choices. I could drop out of college, forget my purpose, and go back to my country. Certainly, my soul couldn't stand listening to the bells of the carillon that marked every hour in the student union building, while knowing that I had failed.
Alternatively, I could press on, gather courage, and keep going in spite of all odds, ignoring all the voices urging me to recede from the challenge and run away. What did I decide to do? I decided not to listen.
Smith Recital Hall is the birthplace of an annual jazz, classical, and world music concert series. The two hundred-seat capacity venue hosts hundreds of events and serves as the training ground for students who need to practice their front of house mixing and recording skills. A Soundcraft Vi4 mixing console was the first learning tool and the first great obstacle for me. A sixteen-channel surface with tactile faders is not accessible enough when you're confronted with a touch screen to patch your signal flow and access all menus. But I'm not used to taking no for an answer, and it was our turn to put the designer hats on. When engineers don't have a solution, we create it from the ground up. We invented a sixteen-by-six system to be pasted on a cardboard frame surrounding the screen of the console. Horizontally it told me where each channel began, and vertically it showed me the margins of each menu page such as inputs, outputs, sends A and B, EQ, and dynamics. The method wasn't perfect, but by touching perpendicularly the dots of the function I wanted to carry out, then drawing a mental square and calculating where the touch screen button lay, I was able to run sound as my peers did, and the audience liked it! My friends helped me learn the board's layout, and soon I was fluent on its operation.
Toward the close of the semester, we had to take a final. If we passed, we had the chance to earn a pair of headphones. My instructor tried to force me to take the console test orally instead of hands-on because "it would be too visual." I sat down in front of the desk and let him know that I wasn't moving until I was given the same exam my classmates took. He had no choice! He administered the interactive questionnaire, and I succeeded with flying colors. I don't think I ever changed my professor's mind; long story short, he resigned before I did! That pair of headphones not only signifies that I learned the material well; it also serves as a reminder that I am strong.
Experiences like these build up my character. They make me find within myself the spirit of a warrior who isn't afraid to stand up for what she believes in and who fights for her rights if she must. But I wasn't always so confident in myself. Other people contributed to my perseverance in this critical period through their unbreakable belief in me.
When we were interns at the studio, which we lovingly called "the crows' nest," we set up for big bands, ensembles, and orchestras. One of the required tasks was securing tripping hazards such as cables and snakes to the ground with gaffing tape. Weekly we were divided into teams to perform the live sound duties. Often my instructor wanted to leave me as a floater member, "to be called only when needed." This was only a way to avoid telling me that a decision not to take my help was already in place. My white cane, for almost any crew I encountered, was a symbol of not being able to do anything. Though I looked forward to every future event with real anticipation, practically every time I asked if I could help with something, I was politely told staff was complete for the evening. If they weren't going to use my help, why didn't they tell me in advance? It feels just as disheartening as when a group of friends asks for help in moving from one house to another, I show up, and they tell me to sit down because it is crowded, and everything is already done. I had begun internalizing the doubts my professor held about me.
Fortunately, I had a really good relationship with our internship supervisor, Kevin, who thought about my abilities differently. I asked him, "Who is gaffing today?" He replied, "You, Michelle, you are!" Surprised and a little shocked, I asked how I could do that. I could see myself setting up mic stands or plugging in monitors, but I hadn't imagined a way to make straight, organized lines of cable without eyesight.
"Feel the ground," he said. Words can hurt or heal, strengthen or create doubt, edify or destroy. Words are an immensely powerful medium. These three words taught me an unforgettable lesson. They taught me that I can overcome my own mental limits and tear them down, that I mustn't judge my efficacy to pursue something if I haven't tried to do it, and that I must give myself ample practice with the discipline beforehand. I must function with the belief that there's an immense wealth of approaches and ways to do things that I do not yet comprehend.
That wasn't the only time someone opened me to new possibilities and methods to achieve results. Jon Kull, prolific composer and orchestrator for films such as Black Panther, Avatar, Harry Potter, and The Fantastic Beasts, had the task of teaching me music for audiovisual media. Personally, I was certain that film scoring was reserved for people whose eyes could follow and observe the action playing out on-screen. I was in for a delightful surprise. For the entire semester, my professor carefully crafted time notes that described each scene and facial expression. The notes described landscapes and animation effects, and they included the slightest changes—not to the second, but to the frame! Armed with this level of equality, I composed for different genres of film and reached the summit of learning with the same amount of constructive feedback given to my classmates.
Toward the end of the semester, we had to turn in a final project. We'd choose a film clip to write music to. Jon enlisted the help of renowned music editor Joe E. Rand, whose credits span from Titanic to Westside Story, and whose clients include John Williams (Star Wars) and Randy Newman (Toy Story). He delivered the time notes of a scene from How to Train Your Dragon for me to score. For countless decades, time notes were the norm, until they somehow fell out of fashion.
The clip I picked was completely silent. I can't tell you what a liberating experience it was to be able to write for a medium without any sound to guide me! It gave rise to new forms of expression that could only use my mind as their compass. Logic Pro, with its intuitive nature and accessibility built into every corner, was also my ally.
I've found treasures in the people life has blessed me with. Thanks to their trust, I wrote compositions whose quality my teachers praised. I feel remarkably proud of myself for persisting and proud of them for believing in me.
The blind help the blind, too. During my last year of university, Cory Wilkins, an audio engineer, drummer, and composer, gave me a chance to acquire skills in his studio. He let me use his collection of microphones, guitar amps, and the best of all, an Alesis HD24 machine that operates almost exactly like an analogue tape recorder from back in the day. He never treated me like a coffee-making intern who is cautioned to stay away from equipment and keep to herself. On the contrary, he gave me the freedom to shadow his sessions, make mistakes, and become an assistant for some of his projects. He could finally focus on being a musician and forget about the technical side, since I was running it.
He patiently explained how to position the mics and how we can tell by ear if they will record with our desired acoustic flavor. He told me how helpful it is to get to the venue early and explore it with your white cane if you are doing live sound so that you may familiarize yourself with the facility before showtime. It makes an extraordinary difference if you feel comfortable with your surroundings. You can participate in load-in and load-out using both hands like any other member of a team. He had answers for each of my doubts.
God has given me the privilege to live a life filled with opportunities that I've diligently managed to take. While I lived in Denver to receive training at the Colorado Center for the Blind, I shadowed audio engineers nine times. I got to experience Broadway's Aladdin and DCPA's (Denver Center for Performing Arts) The Color Purple from behind the board. Theaters, a tango festival, and a recording studio were fertile ground for exploration. A young A1 in particular, Meagan Holdeman, stands out in my list of adventures. Not only did she enthusiastically open her doors and show me the DiGiCo SD9 she was using; she also looked for more places in the city where they'd welcome my whole self, to ask questions and learn as an equal. The invaluable mentorship of the people who have stood beside me demonstrates that each of us, through our lived experience, can look out for each other. By marching together, we have the ability to make this world a better place.
It is easy to get discouraged on the path when I receive yet another email from a console manufacturer, saying that screen reader accessibility is not in their future development plans; when a software update breaks the scripts that made it possible to navigate a DAW; or when in a theater an A1 asks me, incredulously, "How will you be able to mix if you can't see?" But there are gleams of hope on the horizon.
For the longest time, access to the production of immersive audio through Dolby Atmos was denied to blind engineers, but we're no longer left behind. Through Logic Pro's renderer, we can now draw mixes through all dimensions of the sphere. Slowly but steadily, now that we are making progress through our advocacy, we must not quiet down our voices. We must not give up. Our fighting for justice and freedom must continue.
After two weeks of boundless dedication to learning and a little bit of mental insanity, the Pro Tools exam was in front of me.
"Congratulations, you passed!" Leslie said. Her grin was audible. My relief came out in screams. I could stop holding my breath. I'd just become the first blind woman to be Pro Tools certified, and I wish for hundreds more to follow. We have the capability to achieve this and much more.
My orchestral literature professor taught us about the continuous struggle and eventual triumph present in the theme of Beethoven's third symphony, The Eroica, and in many of his other compositions. The free-spirited triad dives forward but then lingers on the accidental of uncertainty several times, before rising in victory. But what moved him to highlight the grueling effort of the journey, the frustration, the fear, the pain—before allowing us to reach our destination?
I believe there is beauty to be found in our battles. Whether you choose to be a lawyer, an architect, a professor, a scientist, a baseball player, or a sculptor, there are inevitably going to be challenges in your way. There will be times when you feel like quitting, moments when your determination is struggling for breath. But challenge is where our faith and spirit grow strong, and it is in struggle where we find the richest, most exquisite rewards. If life is in one way or another going to throw at us degrees of difficulty to conquer, we may as well choose an activity that provides us great amounts of joy in its pursuit. We may as well choose a purpose that transcends our sense of time and goes beyond the ordinary. Choose, with patience and wisdom, what you would like to struggle at.
I will take the liberty to end with a passage from Coldplay's song "Us Against the World": "So whatever you do ... Don't let go!"
by Katie Lane-Karnas and Mae Lane-Karnas
From the Editor: Like most of the general public, I once assumed that blindness and low vision are due strictly to anatomical differences in the eye or the optic nerve. In recent years, however, educators, physicians, and the world at large have begun to recognize cortical visual impairment (CVI) as a form of blindness that originates not in the eye, but in the visual processing centers of the brain.
In this issue I am excited to present two thoughtful articles by and about young people who live with CVI. The following piece was written as a mother-child collaboration.
Mae Lane-Karnas (they/them) is a teen who loves Braille, math, and art. Mae has multiple neurological visual impairments as part of CVI, causing them to function at the level of legal blindness. Mae co-organizes an ongoing CVI discussion group at Smith-Kettlewell Eye Research Institute and has co-presented nationally to clinicians, scientists, inventors, educators, and medical students about their lived experience. Mae emphasizes the need for nonvisual access for all blind students, including CVIers. Mae serves on the board of the National Federation of the Blind of Vermont.
Katie Lane-Karnas is a long-time homeschooling parent. She facilitates her teen CVIer's learning in Braille, Nemeth Code, access technology, and Orientation and Mobility (O&M). Katie authored a paper on her family's journey, "A Case Study on CVI, Reading, and Braille" that was published in 2023 by the Journal of Visual Impairment and Blindness (JVIB). Katie can be reached at [email protected].
Katie Lane-Karnas: We first learned about CVI when Mae was nine or ten years old. We were trying to figure out what was going on with Mae's print reading and writing difficulties. We had never gotten answers to our questions about the problems Mae had, and we realized that a number of their challenges are typical of people with CVI. For example, Mae struggled with extreme dysregulation in highly complex sensory environments such as crowded stores or parties. Mae had trouble following the movements of dogs or toddlers that appeared in their lower visual field. Navigating near traffic was another challenge.
From the time Mae was seven we were extremely concerned about their social and emotional difficulties. Mae had a very hard time in groups with other children. Mae became stressed, controlling, terrified, and even enraged. I observed this reaction firsthand, since I almost always was present. Mae wasn't able to be in groups without adult support, and since we homeschool, I was usually available.
After a children's party Mae would return home emotionally and physically fatigued. They would lie in their room and zone out for hours or even days. When we discussed a difficult experience afterward, Mae would be intrigued and surprised to hear what I observed. When we exchanged our experiences of a difficult scenario, I discovered that Mae had missed a lot of visual and auditory information, as well as contextual clues and nonverbal body language. Often Mae's conclusions about what was happening were far removed from what others experienced. Lacking visual access to information, Mae was making guesses.
We sought help from doctors and other professionals, but no one suggested a sensory impairment or any other specific cause for Mae's difficulties. For years we addressed Mae's problems through the arts, sensory play, and a trauma-informed approach to nervous system regulation. We explored parent-supported friendships, exposure to nature, and deep dives into Mae's academic interests.
Finally, at age twelve, Mae was diagnosed with CVI. By that time Mae had the ability to self-reflect and to describe their visual experience. We made notes on the difficulties Mae described. Mae had no ability to imagine visually anything in their mind's eye, and there were no visual elements in Mae's dreams. Mae had no ability to form a visual memory. Mae described a constant shaking of the visual world and difficulty perceiving motion. In a complex environment Mae only saw one small thing at a time. Among the other issues we discovered were Mae's inability to recognize faces, places, topography, objects, and letters.
Mae Lane-Karnas: I think what I noticed mainly were print problems that were hard to link back to my vision. My best way of explaining it was through oculomotor challenges. I had trouble with my eyes moving smoothly across lines and finding the next line down. I got headaches from reading and eye muscle strain, and from looking at text that appeared to move on the page. Looking back now, I can definitely see how my CVI was having an impact on me in quite extreme ways. Everyone around me assumed that my vision was normal, so I really didn't know that my vision was different from anyone else's.
The symptoms I experienced couldn't easily be linked back to visual problems unless one had an understanding of CVI. For instance, when I was in a less well-known environment like a museum or a playground, especially with groups of people, I would get extremely dysregulated and be stomping around. Everything I did, or tried to play as a game, had "teams." I could control my team and try to be a leader. In that way I could control my understanding of what was happening. My experience often had a physical element. It was a tactile way of getting information and feedback. Those symptoms were caused by me being visually disoriented from visual crowding. I was trying to cope with multi-sensory processing that I can't handle. I was trying to identify people around me when I couldn't see their faces. I was dealing with motion perception difficulties, topographical disorientation, and extreme visual fatigue that caused nervous system dysregulation.
Katie: Mae's childhood vision screenings were normal. They only test for acuity, and Mae's acuities were typical. Like many families of people with CVI, our path to evaluation was difficult, lengthy, and led to many dead ends. Eventually we sought out a doctor who was recommended by a CVI community member. He had published and spoken widely about the range of CVI presentations. His low-vision clinic was professional, and he welcomed family documentation. We traveled to another state to see him.
This doctor had a framework for how visual impairment at the brain level affects various developmental stages, including for those with typical acuities. A medical diagnosis was positively life-changing on a personal level, and it established documentation for Mae to have access to services and accommodations.
Mae: At first I was prescribed glasses with slight magnification. I almost feel they made things worse, unless I was focusing a very steady stream of vision at one place, such as sewing. But that was hard for my ocular muscles to adjust to. Glasses did not really help at all, and I would get quite frustrated because some eye doctors insist that I use glasses, which was not the problem here. For a while I was extremely light sensitive. I got a special brand of light-blocking sunglasses, and we got light-blocking shades for our home. As I discovered more nonvisual ways to access my education and independent travel, my light sensitivity diminished greatly. I notice it comes back a bit if I try to use my vision beyond my capacity.
Before I got my CVI diagnosis, we were thinking about my visually-based academic challenges as general reading problems, and we addressed them with dyslexia interventions. My CVI diagnosis was like a new door that said "Vision Problem! Let's see what the reading strategies and accommodations are for that!"
Because literally nothing had worked with print, Braille was another thing to try. My mom and I started by ourselves, using mini muffin tins and balls of clay so I could learn the Braille alphabet. I learned five letters the first night, and I really, really wanted to start writing something! For the first time I realized that words are made up of letters, and those letters can be rearranged to make new words. I wanted to apply that knowledge! I got a piece of craft foam, a piece of paper, and a sewing pin head, and I started punching oversized Braille into my piece of paper. I wrote one sentence, and I was so excited! I had both my mom and my dad read it; I wrote another one, and had them read that. I was SO happy!
When we started really learning Braille, I was very scared. I was afraid that if I wasn't good enough at it, my Braille instruction would be dropped. I would lose the opportunity to learn Braille because my teachers couldn't see how important it was. At that time I didn't have the words to tell them that learning Braille was the first time I had access to basic literacy, and I needed time to build up all my skills. Sighted children get chances to interact with print constantly, because print is everywhere. Braille is not, and it takes time to build up those skills. You shouldn't drop it after the first few experiences if a kid isn't picking it up "fast enough."
Katie: Mae says it so well! Mae had had years of highly modified print learning strategies, which only caused fatigue and stress. Now we observed that the access barrier to print was alleviated with Braille. We took it one step at a time. Mae's joy and mastery strengthened our resolve to proceed with Braille learning.
Mae is homeschooled, and Braille instruction is at home. As Mae said, we started completely on our own as a family; there is no support for special education of homeschoolers in our state. Slowly we built a support network, and now we have the help of professionals and blind adults. At fourteen Mae was able to access transition-age services through our state Division for the Blind. Mae now has greater access to support services such as instruction in the use of accessible technology. We have obtained Braille materials through our regional and state Braille libraries, NLS BARD, Bookshare, social media groups with free books to pass on, National Braille Press, NFB BELL® Academy, Seedlings Braille Books for Children, and through Federal Quota Funds.
Mae: In addition to Braille, I use a lot of other nonvisual tools. I use a long white cane, and I use JAWS and VoiceOver screen readers. I use a Brilliant BI-40X as a Braille display with my laptop, and I also use a Perkins Braillewriter. I also use various home modifications, such as putting tactile markers on the stove.
Using my vision always has a price tag of energy. Before I discovered nonvisual ways to access the world, I was chronically visually fatigued. My autonomic nervous system was constantly dysregulated from using my vision to do everything. Now that I have learned to use nonvisual techniques, I'm able to do SO much more! I pace my day so when I want to use my vision, I will have the remaining energy I need. Mostly I use my vision for hobbies (drawing and illustrating) and to supplement navigation and cooking. I use my vision to look at shows, along with the audio description.
It's important for me to have nonvisual ways to do important things because external factors can affect my vision dramatically. Sometimes I have no control over how much visual energy I will have available. Some common factors that affect me are heat; crowded, noisy, or cluttered environments; illness; emotional stressors; unfamiliar environments; and lack of sleep. My vision varies when I'm in the car and depending on how hard I have been trying to pay attention to something.
I think if I were in school, I might run into more problems around fitting in socially. My friends are very accepting, and they have reacted the best to my CVI. When I need to self-advocate, it usually goes over fine. My friends will help me if I need it, such as providing me with information. They have needed little to no information about my functional vision. I think they understand quite well what my access needs are, and they always stand up for me. I feel I don't need to tread lightly around how I express my blindness with my friends.
One hard thing when I'm in a group of sighted peers is learning people's names and getting social context. Usually I request an accommodation, such as asking people to speak their names if they have a question or before commenting. I use a more auditory-based style of interaction. I've learned a lot from being in blind-led spaces with peers. I've learned how I want to interact and show up in spaces that are majority sighted people. I think carrying a blind identity with me (that I have learned mostly through the NFB) helps me feel confident. I know how much space I want to take up and who I want to be friends with, based on how they react to me being confident in my identity. I appreciate not having to explain when I use vision and when I do not.
If I could give advice to parents and teachers of kids with CVI, I'd tell them, Don't judge a person's functional visual ability based on what you see them do on the outside. A CVIer's internal experience may be drastically different from what you think you are seeing. The number of compensatory strategies in use can be astonishing. If you don't have a way to communicate about this with your child, please find adult CVIers who can share their experience.
Also, I want parents to understand that medical professionals cannot always be trusted to understand what your child is experiencing. They don't always know to ask what the child's internal experience is, so they might not actually see any of the child's challenges. You have to get the professionals to help you. Document what you need them to know.
Katie: There is a history of children with ocular blindness and low vision having difficulty accessing Braille and blindness skills training. This is not a problem unique to CVI. The "threshold" of vision loss that is expected to be met before nonvisual learning becomes "warranted" is subjective, regardless of the cause of vision loss. I wish we had had the encouragement we needed. Mae deserved Braille and a white cane. Intentionally developing and strengthening the use of touch, hearing, proprioception, and haptics does not diminish Mae's functional vision. In our experience, a child's increased facility to understand the world through nonvisual learning serves to better inform and solidify the visual information they receive. In Mae's case, we have seen that functional vision doesn't improve with training or other visually-based interventions. However, Mae's understanding of the visual world is strengthened, contextualized, and made less terrifying through the use of nonvisual senses, especially the sense of touch.
by Stephanie Duesing
From the Editor: The parent of an adult son with cortical visual impairment, Stephanie Duesing is a powerful advocate for the CVI community. Eyeless Mind, the story of her son's journey with CVI, is available on Amazon and on Bookshare.org.
My son Sebastian has cerebral visual impairment, or CVI, as does our teenaged friend Mae [see the article "Living and Growing with Cortical Visual Impairment" elsewhere in this issue). The NFB has helped many people with CVI over the years. I am writing both to thank you in the blind community and to ask for your help.
CVI is the leading cause of visual impairment in the developed world, but according to the website www.cviscotland.org, most people have never heard of this condition. As you read this article, you may be learning about CVI for the first time, though CVI is more prevalent than ocular forms of blindness.
According to the Perkins School for the Blind, research shows that one in thirty students in the typical regular education classroom is likely to have symptoms of CVI. According to this finding, CVI is more prevalent than autism. Yet fewer than twenty percent of people with CVI have been diagnosed. More than 80 percent of the people who live with this frequently life-altering disability never receive any blindness-related services or any training in the alternative skills of blindness. Research suggests that more than 150,000 people in the US alone live with undiagnosed CVI. You can read more about the prevalence data at https://www.perkins.org/our-work/cvi/by-the-numbers/.
We desperately need a new, updated definition of legal blindness. The definition should not be based simply on visual acuity. It should be based on a person's need for blindness skills such as Braille and orientation and mobility (O&M). Some 150,000 CVIers in the United States are living without the blindness services they need, and often they are severely traumatized as a result.
Sebastian fully supports my advocacy efforts, and I share this article with his full permission. I am a former music teacher, and I made a major medical discovery in the field of visual neuroplasticity. I am an author, speaker, and international advocate for all people who have CVI.
Sebastian has a unique form of visual processing. To date he is the only person in the world known to use verbal mediation to process his vision. He sees with words, much as a bat sees with sound. According to Dr. Lotfi Merabet, the director of the Laboratory for Visual Neuroplasticity at Schepens Eye Research Institute, associate scientist at Massachusetts Eye and Ear, and associate professor of ophthalmology at Harvard Medical School, Sebastian is the most studied individual with CVI in the world.
Sebastian is the only person in the world known to be able to choose to see or not see with his eyes wide open. When Sebastian is not using his verbal mediation to see, he has no conscious perception of sight. He spends most of his waking hours with his very limited vision "turned off." In other words, he is fully blind most of the time.
In my book, Eyeless Mind, I explain how we discovered Sebastian's CVI and how we figured out that he was using verbal mediation to see. We also have shared our story in radio interviews and through podcasts, which you can explore at https://stephanieduesing.com/in-the-media.
Many people reading this article may wonder what CVI is and how it differs from ocular forms of blindness. CVI is a brain-based form of visual impairment/blindness that is caused by damage to the brain's visual pathways. In ocular forms of blindness, damage to the eye and/or the optic nerve impair or prevent light from being transformed into an electrical signal and passed to the brain to form images. People who have CVI (and who don't have co-occurring ocular visual impairments) can see light. However, they struggle to, or simply can't, process those signals into understandable visual images.
CVI may be accompanied by ocular vision impairments. However, it is common for people who have CVI to have normal acuity, as my son does. My blind son passed every vision test, every year, because our optometric exams are decades out of date. There is so much more to vision than acuity, contrast, and color perception!
Research has shown that all conscious perception of sight happens in the brain. Scientists have found that it takes about a tenth of a second after light hits the retina for the signal to reach the back of the brain, when humans begin to experience conscious vision. In other words, the eyes see nothing on their own. The phrase, "We see with our brains, not with our eyes" isn't merely a slogan. It's an actual fact. Our eyes really are just light collectors and signal senders. Seeing is such a complex neurological process that more than forty percent of our brain is involved in visual processing.
CVI is caused by damage to or malformations of the brain. Different areas of the visual processing centers of the brain control different aspects of vision. For example, the right fusiform gyrus is above and behind your right ear. The right fusiform gyrus is associated with facial recognition. People with damage to that area of the brain are likely to have prosopagnosia, or face blindness, the inability to recognize faces. Other areas of the brain are involved in recognizing places, objects, biological forms, words, letters, numbers, simple shapes, movement, color, the ability to map complex scenes, and much more. Each of these areas is connected to other areas of the visual processing parts of the brain. Thus, damage to one area inevitably results in problems with other aspects of vision, because communication breakdowns occur when brain damage is present. Each part of the network is connected to other parts of the visual system.
When a person experiences brain damage and develops CVI, where the damage occurs in the brain is a fairly random process. For that reason, every person who has CVI has a unique experience of their functional vision. Some parts of vision in undamaged visual processing centers of the brain may work quite well, while other parts of vision may be difficult or impossible to use. For example, although my son has severe CVI and is almost completely blind, he can see words, letters, numbers, and simple shapes as a typically sighted person can. The parts of his brain that see and recognize words, letters, numbers, and simple shapes are undamaged.
Sebastian has always appeared to be typically sighted, and he has always excelled intellectually, physically, and artistically. Yet Sebastian has no ability to recognize faces, places, objects, or biological forms by sight. Visually he can't recognize his own hands, face, or body, or anybody else's. However, Sebastian can read and do math visually. His ability to see symbols such as letters and numbers and his ability to form visual memories of them allowed Sebastian to excel academically.
Sebastian has another very common symptom of CVI called simultanagnosia. Simultanagnosia is the inability to see more than one or two things, or parts of things, at the same time. For Sebastian, having simultanagnosia means he has a tiny patch of visual acuity in the center of his visual field that is a couple of millimeters wide. When he's reading, he usually can see two or three letters at a time if the letters are in ten-point font, which is quite small. For Sebastian, and for many other CVIers I know, magnifiers commonly used for people with ocular visual impairments don't help. In fact, they may even make seeing more difficult. Sebastian needs to have things shrunk down to a tiny size so he can fit what he's looking at into his miniscule patch of acuity.
As a result of all these problems with his vision, Sebastian can see almost nothing as a typically sighted person can. He sees like someone in the middle of the ocean in a dense, colorful fog. Everywhere he looks, he sees light, movement, and vague, colorful, unrecognizably blurry shapes. Sebastian's vision is mostly a useless blur of visual "noise," like static on a radio.
Static noise is irritating. Many CVIers describe the constant barrage of unusable visual "static noise" they experience as relentless, painful, exhausting, and overwhelming. They can't turn it off, except by closing their eyes, and they very often wish that they could turn it off permanently. The constant flow of useless visual nonsense coming in through their eyes overwhelms their senses, and it is often exhausting.
In the midst of all this visual "noise," the only things Sebastian sees like a typically sighted person are occasional words or numbers floating by. The words might say, "Walmart," or "Dunkin’ Donuts" as we drive down a road, but Sebastian can't see the sign that the words are written on. He can't see the store, or the parking lot, or the cars around us, or the pedestrians crossing the street, or the grass and trees, or the sky. He simply sees the words floating in space. He is severely visually impaired when his vision is at its best, and blind most of his waking hours because his conscious vision is "turned off."
Finally, one CVI symptom that I have left for last is called visual fatigue, or visual tiring. I left visual fatigue for last because I think it is so important. Visual fatigue is a very common, very well-documented symptom of CVI. It can be an extremely dangerous symptom because it causes CVIers to go suddenly, uncontrollably, blind at unexpected moments. They lose all conscious perception of sight at random times—from being overheated, sick, over-tired, stressed, or overwhelmed. This random loss of conscious vision can and does occur at any time or in any place. Very often it occurs in the most stressful situations—out in a crowd, on a busy street, or at a congested shopping center.
Visual fatigue is caused by fluctuations in blood pressure. I have fainted twice in my life. Both times when that happened, my vision suddenly blacked out, and then I lost consciousness, in that order. People who have CVI have less neurological visual processing power than neurotypical people do, so their vision is more sensitive to fluctuations in blood pressure. When their blood pressure drops, they lose conscious perception of sight far more quickly and frequently than others do. It can take hours or days for them to recover.
Visual fatigue is an extremely debilitating and common symptom of CVI. For people who have no blindness skills, it can be dangerous, even life-threatening, to randomly, uncontrollably go blind while out in public. According to every CVIer I know, visual fatigue is just miserable, even at home in bed.
One of the most important things I want everyone in the NFB to know about CVI is that it can be an entirely invisible disability. Academically, socially, or physically, there is no way to tell that Sebastian is almost completely blind. If any of your typically sighted friends or family members met Sebastian, they would not know that he has any disabilities at all. No doctor, teacher, friend, family member, acquaintance, or stranger on the street ever suggested to us that Sebastian might have a disability of any kind, let alone that he was almost completely blind.
We discovered Sebastian's severe CVI entirely by accident when he was fifteen. I felt terrible that I had missed something so critically important for so long. My child had struggled for years, and I had been unable to help him. It was the most horrible day of my life!
I spend a lot of time raising awareness about CVI. I am a frequent podcast guest. People listening to our story often think that Sebastian is somehow remarkable because no one knew he was blind until he was fifteen.
Unfortunately, what happened to us happens all the time. Sebastian represents the typical presentation of CVI. With one in thirty students in a regular education classroom having symptoms of CVI, we know that the vast majority of CVIers appear to be typically sighted, just as Sebastian does. Furthermore, there is absolutely no way to tell how severe someone's neurological visual impairment is from outward appearances alone.
We found it extremely painful and difficult to bring our discovery of Sebastian's use of verbal processing to the attention of the low-vision profession. I fought hard to get scientific evidence of Sebastian's verbal vision to the professional community. I knew our discovery had huge implications for understanding the "why" behind many learning disabilities. If it was possible for my blind son to read and do math visually, to be blind but not to look blind, I knew that the opposite must also be possible. I knew there must also be people who, like Sebastian, look typically sighted, but who are totally unable to see or visually recognize words, letters, numbers, and simple shapes.
What if some people who are labeled as having learning disabilities aren't learning disabled at all, I wondered. What if those people have CVI and are blind or visually impaired? What if those people have letter and/or number agnosias? Suppose they can't form a visual memory of symbols when they try to read or do math? What if those people could learn just fine if they had access to tactile learning tools such as Braille? I found that it is common for people who have CVI to be misdiagnosed as having autism, intellectual disabilities, or emotional and behavioral disorders.
Not long after we went public with our story, I met Katie Lane-Karnas and her brilliant child Mae. Mae has CVI and is blind. Like Sebastian, Mae passed for typically sighted. Not one person suspected that Mae is blind. Like us, Mae's family had little support from their school district.
Sebastian has graduated from college and has started his career, using only his vision to read, but he has often expressed regret at not having had the opportunity to learn Braille. Though Sebastian can read visually and has outstanding reading comprehension, the process of using his vision exacerbates his visual fatigue and contributes significantly to his visual exhaustion. Access to tactile learning in childhood would significantly have improved Sebastian's quality of life.
Through my work as a CVI advocate, I know many people with CVI who went undiagnosed and/or misdiagnosed for years, as my son and Mae did. All of them suffered trauma from being blind in a world that refused to recognize their blindness or do anything to help them. My son, along with all of my friends who have CVI, experienced trauma because nobody knew they were blind until they were teens or young adults. They did not receive the training in blindness skills that they needed as young children.
It is my position that all blind and visually impaired people have a right to access to tactile educational and habilitative methods and strategies, whether their visual impairment is ocular or neurological. Braille, access technologies, occupational therapy, and O&M with a white cane should be available to all blind and visually impaired people who need it, regardless of the cause of their vision problems.
Visual fatigue is a debilitating symptom of CVI that is easily reduced or relieved by using tactile methods for educational access. Tactile learning needs to be considered when making decisions regarding which educational methods are most beneficial to people who have CVI, even for those who, like Sebastian, can read print visually. Many CVIers find that they learn best using both visual and tactile methods. They can switch back and forth as they need to during the day.
I am deeply grateful to the members of the National Federation of the Blind for your support of families of blind children, including those with CVI. Thank you from the bottom of my heart! We decided as a family to come forward so that what happened to my son would never happen to another child.
I never dreamed that I would spend the second half of my life begging the world to give blind people access to blindness services, no matter the cause of their blindness. Sebastian and I were labeled crazy by the medical establishment for seeking the most basic help. Imagine the outcry if access to medical diagnosis, treatment, and educational and habilitative services were denied to people who have cerebral palsy, migraine, or epilepsy, simply because their conditions are neurological. CVI is not different from other neurological conditions, and the people who live with it have a human right to the blindness services they require to participate fully in life. Please help me to end the madness! We have more than 150,000 CVIers to find, and more are being born every day.
Here are a couple of blogs from dear friends of mine whose CVI also went undiagnosed for years. The first blog is by my very dear friend Dagbjört Andrésdóttir, who didn't know she was blind until she was twenty-six years old. She is a bel canto-trained lyric soprano from Iceland who, like my son, can see and read words despite being legally blind. However, she can't read music because she can't see the staff. She sings the most challenging vocal repertoire entirely by ear.
https://dagbjortandresd.wixsite.com/livingwithcvi
The second blog is from another very dear friend of mine, who prefers to remain anonymous. They are a highly respected low-vision professional. Like Dagbjört, their CVI wasn't recognized until they were an adult. This blog is a must-read for everyone in the low-vision community who cares about people who have CVI.
https://thecviperspective.wordpress.com/home/
This video from the Perkins School for the Blind features Jack Brossert. Jack's CVI was not diagnosed until he was a teen. In this video, he discusses how blindness skills training and his guide dog have helped him develop the skills he needed to go to college and study science.
https://www.perkins.org/resource/my-experience-navigating-the-transition-from-high-school-to-college-as-a-student-with-cvi/
by Flavia Daniela dos Santos Moreira
From the Editor: Flavia dos Santos Moreira is a professor at the Benjamin Constant Institute in Rio de Janeiro, Brazil. Part of Brazil’s Ministry of Education, the Institute is charged with promoting educational opportunities for the blind and visually impaired. Professor dos Santos Moreira is conducting extensive research on the use of tactile methods of communication with children who have visual impairments and additional disabilities such as cerebral palsy. This work may also have value for children who are deafblind or those who have cerebral/cortical visual impairment.
I would like to share with you some of the work I carry out in individualized alternative communication services. I work at the Benjamin Constant Institute, a secular institution founded in 1854 by Brazil's Emperor Pedro II and located in Rio de Janeiro. It is an institution specializing in the needs of people with visual impairments, including early education, basic education, vocational training, and ophthalmological care. In addition, the Institute offers professional training in the field of visual impairment through extension courses and broad postgraduate courses.
Is it possible to indicate the beginning and end of an activity to children with multiple disabilities and visual impairments through tactile signals?
The presence of visual impairment can make it difficult for infants and young children to interact with parents and others who are accustomed to communicating by visual means. When additional disabilities are present, the challenges can be even greater.
The child's ability to represent objects or situations that are outside the visual field or the current context is called semiotic function (Piaget, 1982). Within Piagetian theory, representation involves the ability to evoke, through a sign or symbolic image, an absent object or an action that has not yet been performed. During the sensorimotor period of development that occurs in the first two years of life, the child is in the process of adapting to and integrating into the surrounding environment. At this stage, children cannot yet think about things outside their tactile and visual perceptual fields. Their interaction occurs through direct action with the elements present (Piaget, 1982). In the preoperative period, which occurs between two and seven years of age, children are still largely limited to their sensory environment. It is important to provide experiences that allow children to expand their understanding in order for them to relate words to objects and actions.
In the pre-symbolic phase, children with visual impairments and additional disabilities face unique difficulties in forming concepts regarding elements far from their immediate context. Chen and Dote-Kwan (1995) explain that these children belong to a widely diverse group with visual impairment as a common characteristic. According to these authors, additional disabilities may include intellectual disability, physical disability and reduced mobility, autism spectrum disorder, and fragile health conditions. These children may have syndromes that present complex communication needs, leading to difficulties generalizing skills from one environment to another (Chen; Dote-Kwan, 1995).
It can be a huge challenge for these children to access information related to arbitrary concepts, such as verbal explanations about the beginning and end of their routine activities. Many of these children communicate through informal and idiosyncratic nonverbal modalities, including subtle body movements or natural gestures. Therefore, it is necessary that the people who live with them possess great awareness and sensitivity in order to respond to the child's manifestations of needs, feelings, and interests. It is essential that the child receives a response; if there is no response, the surrounding environment will be perceived as unpredictable and full of ambiguities (Granlund, 1983).
In the absence of vision, touch can be used in communication and learning (Peltokorpi et al., 2023). For example, touch can be used in modeling actions, and children can see with the hands to perceive the details of a given object.
When there is ambiguity and disorganization, things may seem to appear and disappear without any clear and consistent explanation. When this happens children may become withdrawn and passive (Granlund, 1983). Due to additional disabilities, the child's access to information is fragmented, reducing the child's motivation to explore, initiate interactions, or participate actively in everyday situations. Consequently, adults' expectations for the child may become low. The child becomes increasingly dependent on other people and trapped in a cycle of passive and meaningless activities (Chen; Dote-Kwan, 1995).
With this concern in mind, the individualized communication services we provide here at the Benjamin Constant Institute are organized into three phases: beginning, middle, and end. This work is part of a longitudinal research study coordinated by me. It is authorized by the Ethics and Research Committee and approved by the Benjamin Constant Institute through Approved Opinion No. 5,905,847.
The following body-tactile signals were created:
A: Body-tactile signals referring to emotions: angry, sad/pain, and that's okay.
Source: Prepared by the author.
Caption 1: On a wooden background there are three hearts made with white cardboard. The first heart, located on the left side, has zig-zag lines. The middle heart contains a semicircle with the concave part facing downward. The heart located on the right side contains a semicircle with the concave part facing upward. The designs on these hearts were made with black embossed glue.
At the beginning of the lesson, these signs are made on the child's left hand or arm to find out how they are feeling. There follows a waiting period for the child to express his or her response. The response could be a raised index finger, a vocalization, or a facial expression.
b) Body-tactile signals to represent the start and finish of an activity.
Source: Prepared by the author.
Caption 2: From left to right, drawing of an open right palm with thumb up and arrow pointing upward, representing beginning. Next, there is a drawing of an open right palm with the thumb down and an arrow pointing down, indicating finished.
During these alternative communication sessions, the participation of families was essential in the child's various environments. After all, communication is the connection between two or more people, occurring throughout the child's life.
Granlund (1983) emphasizes that every activity has communicative potential. Children's communicative development requires that their actions receive a response. The child's expressive and receptive communication will become deliberate as he or she receives frequent responses from others. For body-tactile signals to work effectively, it is important to consider the child's cognitive abilities, muscular control, state of attention, motivation, likes, and dislikes. Likewise, it is important to observe how the child reacts to environmental stimuli; depending on the child's pathology, excess stimuli may cause difficulties in processing information. I hope that this report can inspire new practices to be carried out with children with multiple disabilities and visual impairment.
Chen, D. and Dote-Kwan, J. (1995) Starting Points: Instructional Practices for Young Children Whose Multiple Disabilities Include Visual Impairment. Los Angeles, CA: Blind Children's Center.
Granlund, M. (1983) "The Importance of Communication." in Anden, G. and J. Brodin. My Body—My Words: Communication for the Mentally Handicapped. National Association for Retarded Children, Young People and Adults, Stockholm (Sweden). Swedish Inst. for the Handicapped, Bromma, pp. 8-10.
Peltokorpi, S. et al. (2023) "Bodily-Tactile Early Intervention for a Mother and Her Child with Visual Impairment and Additional Disabilities: a Case Study." Disability and Rehabilitation: An International, Multidisciplinary Journal. Vol. 45, No. 12, pp. 2057-2072. Available at https://doi.org/10.1080/09638288.2022.2082563 Accessed on June 24, 2024.
Piaget, J. and Inhelder, B. (2000) The Psychology of the Child. NY, Basic Books. https://www.alohabdonline.com/wp-content/uploads/2020/05/The-Psychology-Of-The-Child.pdf
by Stephen Proski
From the Editor: In 2021 Stephen Proski was the recipient of a National Federation of the Blind Scholarship. He continues to pursue his passion for the fine arts and for opening this field to people who are blind or have low vision. This year he will study in Poland on a Fulbright Fellowship.
I've been a traveler in the country of the blind for most of my life. Getting lost, taking detours, becoming stranded, breaking down, and perhaps having a panic attack or two along the way—all these experiences are inevitable parts of the process. The journey itself is the destination, after all. There is no Lonely Planet or Rick Steves’ Travel Guide for navigating this place. Its borders are unseen and undefinable, and whatever makeshift maps I could muster up proved to be ineffective and unreliable.
I refer to myself as a traveler instead of a naturalized citizen because I've spent unaccountable portions of my life assimilating to the culture and customs of a world geared to the sighted. And I did this not for myself, but for the benefit of others.
For a long time, I didn't want to accept my blindness. It became something uncontrollable that others used to define who I was. It determined the expectations they had of me, and those expectations were pretty low. I've put myself into countless uncomfortable and stress-inducing situations trying to accommodate and please other people, when in fact they should have tried to accommodate me. Only within the past two years have I come to realize that I wasn't offered the same opportunities or experiences in school as my classmates. Due to my blindness, the education system wasn't invested in my future in the way it invested in the prospects of others. I was viewed as a burden and treated as such, despite my persistent work ethic and my desire to succeed. People seemed to feel threatened by and skeptical about my blindness. Ironically, the attitudes I perceived left me feeling somewhat skeptical as well. In reaction, I tried to convince myself that I wasn't really blind.
The pressure for assimilation in a disability context is inherently ableist. It implies the need for a cure when cure is not possible or even necessary. It creates internal conflict rife with antagonism. Only recently have I begun to dismantle the atrocities of internalized ableism. The desire to cure me, rather than encouraging me to be an active, capable blind person, became a recurring motif that I didn't know how to manage.
When I was younger I developed an unhealthy obsession with eating carrots in the hope that eating them would improve my eyesight. Carrots contain beta carotene, which the body uses to make a form of Vitamin A that helps the eyes see in low light. A deficiency in Vitamin A actually can cause a form of blindness. I convinced myself that if I ate as many carrots as Bugs Bunny, my eyes would suddenly function properly, i.e., the way other people wanted them to function.
I'm a blind/disabled artist participating in the world of visual art, a world that prioritizes vision (and people with vision) over everything else, especially when it comes to painting. Making art is a choice, and choosing to pursue life as an artist is an even more difficult decision. It requires an incredible amount of commitment, sacrifice, and resilience. It's an extreme sport, and not everyone is cut out for it. The population of professionals in this niche part of the world is startlingly small, just a fraction of 1 percent. I can count on one hand the number of blind artists I know. In general the art world has a reluctance toward embracing the idea of a blind artist and all the complexities and nuances associated with blindness and artistic expression. There are as many ways to be blind as there are to be sighted. We live in a culture obsessed with vision and the subjectivity of the human visual process. Why aren't more blind artists being recognized for their work?
People with disabilities are skilled at adapting. We meet our needs through malleability and ingenuity. Disability as a state of human experience arises not from the failure of a body or the self's inability to adapt to the world, but from the world's failure to adapt to the varied needs of individuals. Backpacking in Spain, studying abroad in France, or uprooting the life I have built to start over in a new city, I have adapted to my surroundings by navigating the sometimes hostile built environment without the privilege of vision.
Prior to attending graduate school, I worked at a nonprofit art studio that supported adults with developmental disabilities. Working alongside other artists with disabilities showed me the epidemic of underrepresentation of disabled individuals in the art world, and it inspired me to reverse that trend. I am determined to amplify my own voice and continue working with other disabled artists to do the same.
I came to discover the National Federation of the Blind when I was applying for scholarships so I could afford to attend graduate school. Prior to that time I had had little access to blind culture or the fabled accounts of blind citizens. It was as though this section of the library had always been unlocatable. It was as though portals would change their location the closer I came to discovering them, leaving me forever lost in a labyrinth of misinformation.
When I attended my first NFB convention in 2021, I felt part of a community for the first time in my life, engaging in cross-cultural exchange unified by the common experience of blindness. At convention I shared my ideas about art and blindness with people who were actually willing to listen. I met people who shared my conviction that the varied experiences of blindness offer a unique lens of perception. Like me, they believed that the harnessing of impairment as a creative force is profoundly radical and decidedly political. Not only to exist, but to make art in the face of a world that wants you silenced or even eliminated, is the ultimate act of resistance.
I didn't know what the Fulbright program was until I read Ben Lerner's Leaving the Atocha Station, a novel based on the author's time as a Fulbright recipient in Spain. I had been completely unaware that most people with at least an undergraduate degree are eligible to apply for a Fulbright fellowship. The Fulbright program is an international exchange facilitated by the US Department of State with funding provided by the US government. Its overall goal is to improve intercultural relations and cultural diplomacy between the US and other countries through the exchange of persons, knowledge, and skills. Participants are selected through a rigorous application process that welcomes applications from students, scholars, teachers, scientists, professionals, and artists. Likewise, citizens of other countries may qualify to study in the United States.
Needless to say, I was hesitant to apply. As usual, thoughts of self-criticism, inferiority, and doubt immediately began to creep around in my skull. I was sure that Fulbright was specifically reserved for, well, people who aren't me. Just spend some time perusing the grantee directory and you'll get an idea of what I'm talking about! However, once I discovered there were other blind Fulbrighters, I persuaded myself that this opportunity wasn't so far out of reach. Even with my cane in hand, with the unwavering support of a few others, this was something to which I could aspire.
I'm happy to report that during the upcoming academic year I will be pursuing research and living abroad in Poland as that country's first-ever blind/disabled Fulbright grantee. My project will focus on cultural attitudes toward ableism through the lens of Polish postwar mosaics and architectural ceramics, specifically factories that once employed blind/disabled workers during the reconstruction of the country after World War II. I look forward to learning about the blind/disabled experience from the perspective of another country, and I welcome the opportunity to collaborate with others and connect with my Polish heritage. I know my ancestors lived in Poland, but, like my vision, any memory of this place seems to deteriorate over the course of time. There is a strong blind community in Poland, and I'm excited to represent my community and to establish cultural connections between blind/disabled people in the US and those in Poland. I hope to make Poland my home away from home, while still maintaining a permanent residence in the country of the blind, where things have become a little bit more navigable.
by ZuZu Sampson
Reviewed by Deborah Kent Stein
Braille Boy
by ZuZu Sampson
ResearchOnce, Rochester, NY, 2023
32 pages
Available in audio format from National Library Service for the Blind and Print Disabled (NLS.org) as DBC 30394
Available in print/Braille format from Seedlings Braille Books for Children and from Audio and Braille Literacy Enhancement (ABLE.org)
When ZuZu Sampson was in second grade, he struggled to master the Braille code. Letters such as d and f or e and i, which could easily be reversed, were endlessly confusing. Sometimes ZuZu imagined that a mischievous monster called Braille Alien was misleading him and causing him to make mistakes.
ZuZu wondered if anyone had ever written a story about a student struggling to learn Braille. He and his teacher searched and searched, but they couldn't find the story ZuZu wanted. Finally ZuZu decided to take the matter into his own hands. He wrote the story he wanted to read.
ZuZu's story, Braille Boy, recounts the adventures of a boy who resists the Braille Alien in order to rescue Braille for all Braille readers. ZuZu's family was so delighted with the book that they decided it should reach a wider audience. For two years they searched for a publisher, but to no avail. At last a small company called ResearchOnce agreed to take on the project. The publisher envisions Braille Boy as the first in a series of superhero books for young readers. ZuZu's second book, The Amazing Adventures of Braille Boy: Teamwork, is due to be published this summer.
The Braille Boy series seeks to instill values about civility, kindness, and being a good citizen. No matter what adversities he must face, Braille Boy, the superhero, always prevails.
"Don't think about what others might tell you about your story," ZuZu advises other young authors. "Your story is unique in its own way, and it's amazing!"
by Carlton Anne Cook Walker
From the Editor: As many readers of Future Reflections are aware, Carlton Walker is a fierce and tireless advocate for the rights of blind children. As an attorney, a teacher of blind students, and the parent of a blind child, she brings many layers of experience and expertise to the challenges blind children face today. In this article she explains a recent ruling by the US Supreme Court and ponders how blind students may be affected.
School is out, but the summer of 2024 has kept me and other education advocates very busy! While we monitor the provision of Extended School Year (ESY) services to our students, we also support our families with ideas for summertime learning and fun.
Summertime also brings the annual convention of the National Federation of the Blind (NFB), as well as the annual conference of the National Organization of Parents of Blind Children (NOPBC) and the annual meeting of Professionals in Blindness Education (PIBE). (Both NOPBC and PIBE are divisions of the NFB). This summer also marked the inaugural class of NFB's IEP Advocacy Academy, and several participants presented IEP workshops at the NFB Convention.
As I eagerly prepared for the NFB Convention, the US Supreme Court issued a decision that seemed to change the very foundation of federal law. As you may know, federal law provides the basis for IEPs (Individualized Education Plans—the documents that guide the educational access, instruction, and tools for students with disabilities, including blindness and low vision. In addition, federal law serves as the bedrock of civil rights laws that secure the right to both reasonable accommodations and freedom from disability-related discrimination.
In recent years the US Supreme Court issued three opinions that have expanded the rights of students with disabilities (Endrew F. v. Douglas County School District (2017), Fry v. Napoleon Community Schools (2017), and Perez v. Sturgis Public Schools (2023). None of these decisions had a dissent. Each justice agreed with the judgments of the Court—judgments that solidified the rights of disabled students. Endrew F. clarified that IEPs must be "appropriately ambitious in light of [the student's] circumstances." Fry opened the door to allowing students with disabilities to enforce their civil rights to reasonable accommodations—even when the IEP team refuses an accommodation. The unanimous Perez decision further empowered disabled students with IEPs by removing a longstanding hurdle to enforcing their civil rights outside the IEP process.
As an advocate for blind/low-vision students and their families, I eagerly embraced each of these rulings. Taken together, these three decisions strengthen my clients' positions as we advocate for a free and appropriate public education (FAPE), including instruction in blindness skills such as Braille, Nemeth Code, tactile graphics, assistive technology, and orientation and mobility. The fact that the US Supreme Court reached each of these judgments unanimously served to reinforce the principles of these cases.
Meanwhile, the NFB has continued its tireless advocacy for blind individuals, including public school students. These efforts have resulted in notable federal protections for our students, including federal regulations and positive administrative regulatory guidance from the US Department of Education and the US Department of Justice (through Dear Colleague Letters, factsheets, and other publications). These documents help clarify the rights of blind/low-vision students to IEPs, Braille, assistive technology, and more in public schools, including public charter schools. These guidance documents have also clarified the right of students of all ages attending public or private schools or colleges to accessible curricular materials, effective communication, etc.
On June 24, 2024, the US Department of Justice's final rule regarding "Nondiscrimination on the Basis of Disability; Accessibility of Web Information and Services of State and Local Government Entities" became effective. Wow! And, in just a few days, the NFB Convention would bring together thousands of blind people and allies. NFB IEP Advocacy Academy participants would be presenting their first IEP workshops. Despite the suffocating heat of June, buds of equity abounded in the garden of blind students' rights.
Yet, on June 28, 2024, before those buds had a chance to bloom, our US Supreme Court issued an opinion that threatens to scorch those buds and leave the garden wilted and weak. This case, Loper Bright Enterprises v. Raimondo, upended four decades of jurisprudence in the area of administrative law. In non-lawyer speak: Loper Bright diminished the power of many of the educational and civil-rights protections that blind/low-vision students enjoyed prior to June 28.
In Loper Bright, the Court expressly overruled its own June 25, 1984, unanimous decision, Chevron v. Natural Resources Defense Council, which recognized the expertise of regulatory agencies (such as the US Department of Education and the US Department of Justice) and directed the courts to give deference to reasonable agency interpretations of Congressional statutes in cases where those statutes were ambiguous. This interpretation became known as the Chevron Rule, and it served as the basis of administrative law for more than forty years.
While we still do not know the full impact of the Loper Bright decision, we do know some things. Loper Bright does not have an impact on case law (court decisions) or federal law passed by Congress. Instead, Loper Bright removes the Chevron Rule, so courts will no longer defer automatically to federal agency regulations or guidance. Nevertheless, Loper Bright instructs that courts may use regulations and agency guidance to help determine the appropriate interpretation of ambiguous Congressional legislation.
For blind students, Loper Bright will likely impact civil rights (reasonable accommodations and freedom from disability-related discrimination) more than educational rights (IEPs). Congressional law, the Individuals with Disabilities Education Act, plainly sets forth many IEP rights, including broad definitions of assistive technology devices and services, least restricted environment, members of an IEP team, and the explicit inclusion of orientation and mobility services as related services. Moreover, the IDEA statute (Individuals with Disabilities Education Act) includes the Braille Provision, which ensures the rights of blind/low-vision students to Braille use and instruction unless such is deemed "inappropriate" for the student. Loper Bright does not impact these important educational rights. In addition, as noted above, other recent Supreme Court decisions have bolstered students' educational rights.
Loper Bright will likely have far more impact in the area of civil rights. At its core, Loper Bright argues that the Chevron Rule stripped courts of their duty to interpret Congressional statutes and major civil rights statutes such as the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504). These statutes tend to be less detailed and more controversial than is the IDEA. In particular, businesses and governments may well seek to use Loper Bright to challenge the long-awaited Web Accessibility rules referenced above. Other regulations and guidance relating to reasonable accommodations may face challenges as well.
Back to our initial question: "Will the US Supreme Court's Loper Bright Decision Burn Blind Students?" I have to offer the typical lawyer answer, "It depends." I do not expect Loper Bright to shake the foundations of educational rights for blind students. However, I fear that it will "burn" individuals who rely on civil rights protections contained in the ADA and the Section 504 regulations for guidance, including blind individuals of all ages. Let us be ever hopeful and ever vigilant!
by Arielle Silverman
From the Editor: Arielle Silverman serves as Director of Research for the American Foundation for the Blind (AFB). In this article she reports on a pair of studies conducted by AFB to determine the nature and scope of barriers encountered by blind people when they attempt to perform tasks using online platforms.
To be fully included in modern life, people need access to digital information and services. Blind people are no exception. From elementary through graduate school levels, blind students are often required to use Web-based or app-based digital tools to complete their coursework, even after schools returned to in-person learning following the pandemic. Blind parents must use websites or apps to support their children's participation at school. Blind jobseekers find and apply for jobs online, while blind employees use videoconferencing tools to communicate with their colleagues. Blind people use websites or apps to review their medical information, handle finances, order grocery delivery, find housing, make travel arrangements, access public benefits, and engage in online dating. Furthermore, many businesses are rolling out kiosks that customers must use to check in for appointments or pay for their purchases.
At the American Foundation for the Blind (AFB) we conduct original research to drive change. We strive to create equal opportunities and expand possibilities for blind Americans. While studying the impact of the recent pandemic on blind children and adults, we repeatedly heard that digital systems people needed to use were often partially or totally inaccessible. In a prior issue of Future Reflections, I wrote about the prevalence of inaccessible digital learning tools that blind and low-vision children were required to use during the pandemic. (See "Lessons from the Pandemic: Research on the Experiences of Blind Students and Their Families," https://nfb.org/images/nfb/publications/fr/fr42/4/fr420407.htm.
Over the past two years, AFB researchers conducted two studies specifically asking blind adults about times when they needed to use websites, mobile applications, or kiosks that posed access barriers. We wanted to know which types of digital tasks posed the most frequent barriers, what kinds of barriers people faced, how they coped with the barriers, and how these barriers to digital access affected their daily lives.
AFB's first study was a large survey, completed by 398 blind adults in November-December 2022. The survey asked whether the participants used websites or apps to perform some thirty-five different tasks. If they did, how often did they experience accessibility barriers? The survey also asked what kinds of accessibility barriers the participants encountered and how those issues affected them.
In November 2023 we followed up by having twenty blind adults fill out a daily diary for ten days. On each day they wrote down how many accessibility barriers they encountered. Then they chose up to three barriers from the day and described them in detail, explaining what happened and how they addressed the situation.
Through the first study we learned that most of the blind adults reported encountering access barriers at least occasionally with websites and mobile apps. The tasks that presented barriers to at least eighty percent of survey participants included taking online college classes, finding and applying for jobs, booking out-of-town trips, ordering food delivery, and online dating. Similarly, in the second study, the participants reported encountering an average of 1.77 barriers per day, or about twelve per week. Participants in both studies told us the most common sources of issues were unlabeled buttons, images without written descriptions, controls that did not work with screen readers, and small font or poor contrast for low-vision users. In the second study, some of the participants also reported difficulties using kiosks that feature flat touch-screen interfaces without large print or speech output. The participants said they had to find a sighted passerby or ask staff at a business to manipulate the kiosk for them.
The participants described using a myriad of strategies to overcome access barriers. In the first study, over half of the participants said they first tried switching from the Web version to the mobile app version (or vice versa), or switching browsers or screen readers. Often, though, these strategies did not resolve access barriers on their own. In the second study, while about half the barriers were resolved independently, another twenty-three percent required sighted assistance. In the remainder of cases, the participants ended up abandoning the task they were trying to accomplish.
Unsurprisingly, dealing with access barriers takes up valuable time. We documented this in the second study, where the participants told us how much time it took them to complete digital tasks that presented barriers. They estimated how much of that time was spent navigating each barrier. On average, the participants said they spent forty-five percent of task time resolving access barriers. Put another way, by the participants' estimation, digital tasks take almost twice as long when access barriers occur than they would take if there were no barriers. When we averaged the time spent resolving barriers, we found the participants reported spending about twenty minutes per barrier, or four hours a week. That time adds up!
In addition to lost time and productivity, digital access barriers made participants feel frustrated and left out. Participants in the first study linked digital access barriers with a loss of independence, privacy, and choice about which businesses to use for digital goods and services. In the second study, participants told compelling stories of how digital access barriers made life more difficult for them. A blind father took his daughter to the trampoline park, then almost had to leave because the mandatory digital waiver form was inaccessible. (Fortunately, a kind stranger assisted him.) Other participants reported needing to give their banking information or personal identifiers (such as date of birth) to strangers in order to use kiosks for payment or appointment check-ins. Still others struggled to book out-of-town travel to visit friends and loved ones.
Web, app, and kiosk access barriers not only have an impact on blind and low-vision users. These barriers create inconvenience and extra work for sighted family members, friends, and others who are called upon to assist, sometimes urgently. Businesses that use inaccessible digital systems also lose potential customers. In our first study, forty-one percent of website users and forty-four percent of mobile app users said they will take their business elsewhere after encountering an inaccessible digital system. In the second study, which was deliberately conducted over the Black Friday and CyberMonday shopping periods, in seventeen cases a participant abandoned an online purchase they had intended to make when they encountered digital access barriers. In addition to issues such as unlabeled buttons making it difficult or impossible for blind users to buy things online, some participants said they did not have enough information about products to make informed decisions, since shopping sites sometimes displayed images of products with little or no image description.
How do we solve this systemic issue? In our study reports we urge federal policymakers, business leaders, and computing educators to work together toward full digital inclusion. First, the federal government must enact and enforce laws and regulations requiring all digital systems to be accessible and set accessibility standards for kiosks. Second, all businesses and organizations with a digital presence should follow the most up-to-date accessibility standards. To do this, they should hire Web and software designers and managers who are knowledgeable about accessibility. Third, university computer science instructors should include accessibility lessons in their courses to help close the accessibility skills gap.
On April 24, 2024, the US Department of Justice (DOJ) published a final rule on web and software accessibility under Title II of the Americans with Disabilities Act. This rule requires entities under state and local governments to make their websites and apps accessible. The rule covers public schools and colleges, transit agencies, and public utility companies, among other entities. This rule will be instrumental in ensuring that blind children and young adults have full, timely access to their digital course materials.
The final Title II rule came after more than fourteen years of advocacy. The American Foundation for the Blind and the National Federation of the Blind worked together, along with the American Council of the Blind and the National Disability Rights Network, to advocate for the adoption of this final rule. In addition, more than two hundred disability organizations commented on a draft version of the rule that was released last year, urging the DOJ to remove harmful exceptions that would have allowed schools to use inaccessible learning management systems, among other things. Thanks to this collective advocacy, supported by the AFB's research on the impacts of inaccessible educational tools, the harmful exceptions were removed.
The Title II rule is just one step toward full digital inclusion for everyone. There is still much work ahead, but when digital inclusion is achieved, the benefits are many.
At the end of the second study, participants reported on websites and apps where they had a smooth, barrier-free experience. They celebrated the ability to do digital tasks independently, even those as mundane as reviewing their medical records or bank statements. The participants reported a profound sense of inclusion and pride when they could access a website or app on the same level as their sighted counterparts. One participant wrote about the app used by their children's school, "It is incredibly important for me as a parent to have access to information about my kids' schools. This app provides the kind of access I wish I had everywhere!"
To learn more, read the full "Barriers to Digital Inclusion" study reports at www.afb.org/bdis.
To learn about AFB's latest research studies, sign up for updates at www.afb.org/research.
by Cricket Bidleman and Karen Smith
Reprinted from Braille Monitor, Volume 67, Number 5, May 2024
From the Editor: Playing games together can be an endless source of fun for friends and family. For us as blind people, however, issues around accessibility and inclusion can become complicated. No matter how much we want to join in the fun, we may feel apprehensive about inconveniencing others when a game is not fully accessible. In this article Cricket Bidleman expresses her delight over being fully and unquestioningly included by a group of friends.
I didn't have many games growing up, other than a Braille Monopoly® set, a couple decks of cards, and Uno®. I sometimes spent hours using my slate and stylus to make game cards; sometimes I had to staple packets of index cards together to include all the information that was on one print card. By this point, the "cards" were far too bulky to do anything with, and shuffling decks was a real pain. If I was tag-teaming with someone, I could kick some serious butt at Mario Cart. At one point, my brother taught me how to play various Pokémon games on his Game Boy and Nintendo DS. Most of the creatures made unique sounds. Although I'd like to think this was an intentional accessibility feature, probably it was added to make the games enticing for sighted players.
The first time I encountered a variety of games was in college, where my friends had impressive collections of card games, board games, and social deception games ... and most of them were inaccessible.
Fortunately, my friends didn't mind adapting the games to make them more usable for me. One friend even went so far as to make an all-online version of Avalon—a social deception game in which certain characters had access to information that other players couldn't see. Essentially, certain characters knew who was on their team. My friends didn't necessarily understand the scope of inaccessibility, nor what it's like to live in a world where inaccessibility is so rampant, but I was incredibly privileged to have friends who were willing to go the extra mile to include me in recreational activities.
I met my friends Ryan and Maivboon ("My-boon")—now essential members of my family—in my second quarter of freshman year. Ryan's enormous collection of games truly eclipses all others. If I recall correctly, they took up almost the entire back seat of a car in 2018. I had never heard of the vast majority of these games, but fortunately, Ryan and his friends were very willing to foster an inclusive gaming environment.
It was not very difficult to find alternative techniques for playing some of those games. You could use a random number generator for games that needed number sequences. You could use an Optical Character Recognition app to scan cards, or have someone else read or text information. You could team up with someone when boards had no tactile squares or when there were no tactile differences between differently colored pieces. You could put stickers on pieces that blind players are using, add labels to cards, etc.
I constantly have had to fight for accessibility. I felt that asking for accessibility around games was wrong and taboo. I was essentially asking people to do something extra to facilitate my participation. When they did so, voluntarily and gracefully, I was incredibly grateful.
Blindness was never a big deal on board game nights—I felt truly included and welcome. I didn't feel like I had to sit on the sidelines unless I wanted to. In fact, sometimes I would volunteer not to play a game because I didn't want to be an inconvenience, and someone would come up with an alternative technique that would let me participate without much trouble.
When Ryan brought his parents back to the dorm for some games one night during spring break, I really thought about sneaking off to my room so as not to be an inconvenience. I had learned to assume that people didn't know anything about accessibility and were automatically conditioned to be resistant to it. While Ryan was used to finding solutions by now, I assumed that his parents wouldn't want to do something extra so that I could participate. Ultimately I decided to stay with them, and it was the best decision, because we're now family.
It has been over six years since that night. Periodically I wondered what kind of impression my accessibility needs made on Ryan's parents. When I stayed with them during COVID-19 and after, I tried to be as unintrusive as possible in terms of accessibility. It wasn't until they asked me why I hadn't already labeled their appliances that I ended up doing so. That was one of the very few times when someone invited me to implement accessibility rather than me having to ask. I have tears in my eyes thinking about how loved and welcome I felt in that moment, and honestly, during all the time that I've spent with them. They didn't necessarily understand accessibility at first, but they were and are willing to learn and implement solutions. Nevertheless, I couldn't get rid of the feeling that blindness was an inconvenience to all of us, and that their introduction to accessibility on that board games night ruined what should have been some family fun.
I read this Facebook post from Ryan's mom Karen for the first time last weekend, although she wrote it six years ago, and I am sharing it with her permission. It is so incredibly refreshing to find out that my blindness and accessibility needs were not a burden for them. I want to end with what Ryan's mom wrote. Until the day when everyone recognizes the importance of universal design in fostering inclusion, I hope that more people will approach blind and disabled people with the open-mindedness and love that the Smiths have constantly shown me.
Last night was a first for me. It was an amazing night. I have tears in my eyes as I write this. Dan and I caught a plane yesterday to spend the weekend with our youngest son, Ryan. He is on spring break during his senior year in college. He is working during the break, so he was not able to come home. We had a nice dinner together and then he invited us back to his dorm for game night. Ryan brought down a selection of board games and we would decide what to play as the evening progressed. And now the amazing part, one of the college students that joined us is blind. Her name is Cricket. That is all I know about her. That is because there was no focus on her blindness. The focus was on the fun we were having playing these games together (complicated games that were new to most of us, but a whole lot of fun). The players just naturally described the game boards, the visuals, things relevant to playing the game, and things that were just aesthetic about the gaming pieces. One of the players also directed her hands to the embossed areas on the pieces and on the game boards, even though it was not needed to understand the rules. There were times when secret information on the game cards needed to be provided to Cricket. When it was legit for one of the other players to also know the information, they texted the info to her phone so her app would read it to her earpiece. When the information could not be shared with another player, one of the players escorted Cricket to find someone else in the dorm who could read the card to her privately. All this was done with a simplicity and naturalness that flowed as a part of the game. Being a part of this evening and the amazing kids made me more proud than I can express. I am in awe of both Cricket's ability to quickly absorb and play something that I needed all my senses to comprehend and the other students' abilities to improvise how we played the games. I may never look at a game board the same way as I run my fingers across the embossed areas.
It is often assumed that it is extremely difficult or even impossible for blind people to enter the fields of science, technology, engineering, and math (STEM). However, the National Federation of the Blind understands that, with the proper tools, environment, and encouragement, blind people can participate equally in almost any career field they choose.
This is where you come in! As a parent, you want to support your child's active participation in every area of their education, including science and math. The NFB has developed toolkits to support you in guiding your child's successes in STEM and much more.
In our toolkit, you will find:
You may be thinking to yourself, "My child has no interest in science," or "My child wants to be a musician, so STEM isn't important."
There is a common misconception that science and math are primarily visual studies, and that they are of little interest or use for blind children. If that is the case, why have we put together an entire toolkit to help you encourage your child's STEM learning?
Let's take a step back. Why is it important for children in general to participate in STEM? Blind or sighted, not every child wants to become a scientist someday, but science is part of every school curriculum.
Researchers have demonstrated the benefits of STEM education for all students. The benefits of science education include the development of problem-solving and decision-making skills. Learning opportunities in STEM have been shown to benefit children in all areas of academics, including literacy and language. When children learn through STEM activities, they build skills and knowledge that will help them prepare for careers in a variety of fields.
Your blind child should be able to participate equally and effectively in the same STEM learning opportunities that are available to their sighted peers. With accessible technology, practice, and alternative techniques, your child can have fun and enjoy successful learning experiences. We hope that the information provided in our STEM toolkits will help you set high expectations for your child's ability to be an active learner in their classrooms and at home.
Here are some great activities to help you and your child build key skills to support their STEM education. The grades given here are only suggestions. Please feel free to explore the activities in all the grade levels and do whatever activities are appropriate for your child's skill level and interest. These activities are meant to be a springboard. We encourage you to explore and expand on the main ideas presented here.
Learn about shapes and tactile drawing, tools and technology, DIY (do-it-yourself) accessibility tricks, and building nonvisual skills in our preschool and elementary activities section.
Preschool and Elementary Activities [https://nfb.org/node/15497]
Learn more about drawing, adapting tools and technology, and building nonvisual skills in our junior high and high school activities section.
Junior High and High School Activities [https://nfb.org/node/15498]
Learn about the many simple and low-cost strategies that can make everyday items more accessible in our section on additional details for DIY adaptations.
Additional Details on DIY Adaptations [https://nfb.org/node/15499]
You can find the NFB EQ for Parents: A STEM Learning Toolkit for Parents of Blind Children online at https://nfb.org/programs-services/education/national-center-blind-youth-science/nfb-eq/nfb-eq-parents.
“I can’t imagine my life without Braille and my long white cane. I am so blessed that my mom fought to help me develop skills I value now.”
For many blind children, the journey to independence and inclusion begins at an early age. Through tactile exploration and literacy, children gain the skills and confidence needed to navigate the world. In partnership with the National Federation of the Blind, the American Action Fund believes no blind child should be without the tools necessary for this journey. This is the motivation behind our Early Childhood Initiatives, which include the Braille Reading Pals Club and the Early Explorers program.
The Braille Reading Pals Club is designed to introduce young blind children and their families to the joys of literacy through Braille. This program fosters a positive attitude toward Braille and encourages sighted family members to share in the love of reading with their blind children. Tailored for blind and low-vision children from birth to age eight, the Braille Reading Pals Club provides an array of resources to support early literacy. Participants receive print/Braille books and Braille birthday cards, and they build a connection with the National Organization of Parents of Blind Children. When they join the Braille Reading Pals Club, families access essential literacy tools and become part of a supportive network dedicated to the growth and development of blind children.
The Early Explorers program is crafted to introduce young blind children and their families to the long white cane, promoting independence and confidence from an early age. This program equips children with the foundational skills they need for cane travel, setting them on a path of curiosity and self-reliance. Program participants have access to an informational DVD that provides strategies for teaching beginning cane travel skills to young children, a child-sized free white cane, and a variety of Future Reflections articles on cane travel.
By joining the Early Explorers program, families take a crucial step toward fostering their child's independence and confidence in navigating the world with a white cane. You can sign up for one or more of our early childhood programs at https://nfb.org/programs-services/early-childhood-initiatives/early-childhood-application.
By supporting the American Action Fund, you're not only helping a single program; you're investing in a future where blind children can grow up with the tools and confidence they need for full participation and independence. Your contributions are instrumental in creating a more inclusive and accessible world for the blind community.
Join us in our efforts to ensure that every blind child has the opportunity to explore, read, and grow with confidence. Together, we can make a significant impact in the lives of these young explorers and readers.
Learn more about our programs, including the Early Childhood Initiatives, on our website: www.actionfund.org/programs.
Your support helps keep our resources free for blind children and adults. You can contribute to the Action Fund in three easy ways.
Make a gift online by visiting https://actionfund.org/donate.
Give over the phone by calling 410-659-9315.
Send a check made out to "American Action Fund" to 1800 Johnson Street, Baltimore, MD 21230.
Often the simplest and most significant way to make a charitable contribution is to plan a legacy gift. Creating a lasting impact is easier than you might think. Choose an option that works best for your circumstances.
You can plan to give all or part of a bank account, insurance proceeds, investment assets, real estate, or a retirement account. You can even give a required minimum distribution from your IRA directly to charity and avoid taxes on the distribution. After taking care of your loved ones, you can bequeath a specific dollar amount or a percentage of your estate to an organization whose mission is important to you.
The American Action Fund for Blind Children and Adults Legacy Society recognizes and honors the generosity of friends of the Action Fund who have chosen to leave a legacy through a will or other planned giving option.
If you wish to give part or all of an account, simply fill out a P.O.D. (payable on death) or T.O.D. (transfer on death) form. For pensions and insurance assets, simply designate a charity as a beneficiary. If you would like to leave a legacy to the Action Fund in your will, include the following language:
"I give, devise, and bequeath unto the American Action Fund for Blind Children and Adults, 1800 Johnson Street, Suite 100, Baltimore, Maryland 21230, (EIN# 52-1192529) the sum of $______________ (or) _________ percent of my net estate (or) the following stocks and bonds: ____________________, to be used for its worthy purposes on behalf of blind persons."
If you have questions or would like more information, please reach out to Patti Chang at 410-659-9315 or [email protected]. If you have included the American Action Fund for Blind Children and Adults in your will or have made some other provision for a future gift, please contact Patti so we can recognize you as a member of our Legacy Society.
Legacy gifts carry the values and ideals that have been important to you throughout your lifetime and provide for generations of blind children and adults. Please consider the American Action Fund in your future plans.
Dare to Be Remarkable
https://nfb.org/programs-services/employment/dare-be-remarkable
Contact: Edward Bell, [email protected], 318-257-4554
Anil Lewis: [email protected], 410-659-9314, ext. 2374
Dates: November 11-13, 2024
Location: NFB Jernigan Institute, Baltimore, MD
The NFB Jernigan Institute will host a three-day conference for education and rehabilitation professionals who work with blind students and adults. The conference will include keynote presentations by leaders in the education and rehabilitation fields, work groups on Structured Discovery training methods and principles, professional think tank work group sessions for vocational rehabilitation instructors, and consumer panels on strategies that work.
Life Launch
https://www.perkins.org/transition-center/life-launch
Contact: 617-972-7573
Scheduled to begin in July 2025, Life Launch is an innovative, multi-faceted program that prepares young adults who are blind or visually impaired and have additional disabilities for independent living through hands-on work experience, concrete skill development, and real-world community engagement. Life Launch teaches young adults to develop independent living skills, prepare for meaningful employment, and actively engage in their communities. It is an immersive two-year program that includes mentoring, job shadowing, and internships. It also involves transition support and counseling in the years after graduation.
Swell Form Pro
https://americanthermoform.com/product/swell-form-pro-machine
800-331-3676
Zychem Technologies Pty Ltd, in collaboration with its parent company American Thermoform, is excited to introduce the Swell Form Pro, a state-of-the-art tactile graphics machine used to create educational products for the blind and visually impaired. The Swell Form Pro is specifically designed to improve and enhance the tactile graphic production capabilities for large-scale publishers. At speeds up to seven times faster than the standard swell form machine, this increase in efficiency can enable producers to expand their output rapidly and reach customers more quickly than ever before. The Swell Form Pro reduces the need for extensive human resources, thereby allowing publishers to redirect their efforts to other critical areas of development, production, and service.
Braille Word Builder Game
National Braille Press
https://shop.nbp.org/products/braille-word-builder-game
Use your Braille skills to find the most words! Includes Braille and print game boards and instructional pamphlet. Practice your Braille skills by finding as many words as possible in these five-by-five grids of letters in a set amount of time. The game contains twenty-five regular boards for uncontracted Braille and five challenge boards containing contractions. Each game board has five copies (four cards in SimBraille and embossed Braille, and one card in SimBraille and large print), so up to five people can play at once.
64 Ounce Games
https://64-ounce-games.myshopify.com/
64 Ounce Games accessibility kits allow blind and sighted players to play together with a retail product. What is included in an accessibility kit can vary from game to game, depending on the needs of the game. Most kits consist of a printout with all of the text of the cards. Included are instructions on assembly. The majority of the kits require a blind and sighted person to work together for initial assembly. A few kits can be used without knowledge of Braille. Some cards with a lot of text may include QR codes to be used with a reader such as the iPhone. This allows players to read their cards without assistance. All of these kits are clearly labeled. Other kits may include custom dice or tokens specific to the game. All kits require the original retail game, and a link to an online retailer is provided. Some kits listed as combo kits come with both the game and the kit, but they are not yet assembled. Games include:
Exploding Kittens
Apples to Apples
Bananagrams
Taboo
Ticket to Ride
Five Crowns
Catan
Scattergories
Voice of the Ancients
https://apps.apple.com/app/apple-store/id1142099795?pt=1173208&ct=bc&@mt=8
Peter Sallai, a mobile game developer, specializes in creating games for blind and low-vision players. Voice of the Ancients is an adventure game that can be played on an iPhone. You are in the French Foreign Legion in the Sahara when a dying teammate gives you his father's diary. The diary contains clues to a long-lost temple full of treasures. After you set out on the temple's trail, you realize that a secret organization, the Society of the Ancients, also is searching for the temple. In addition to solving the diary's mystery, you must escape from the Society. The game is controlled entirely by voice, so playing it is like having a conversation, with no need to touch the keyboard. The first episode is free.
Barbie Fashionistas
Barbie® has introduced the first blind Barbie fashionista doll and the first Black Barbie fashionista doll with Down syndrome, allowing more children to tell stories through play. As part of this year's global fashionistas lineup, Barbie partnered with the American Foundation for the Blind and the National Down Syndrome Society to ensure doll designs that accurately reflect the community they are designed to represent. These dolls allow even more children to find a doll that represents them and inspire all children to tell more stories through play. Barbie partnered with the American Foundation for the Blind (AFB) to ensure details of the blind Barbie doll, including face sculpt, fashion, and accessories. The doll comes with a white cane with a marshmallow tip and includes stylish yet functional sunglasses, as worn by some individuals sensitive to light. The name "Barbie" appears in Braille on the package.
2024 Touch of Genius Award
Talking Tactile Tablet
https://www.touchgraphics.com/store/p/t3-games-book-new-for-2022
National Braille Press (NBP) has honored Touch Graphics, Inc., for its latest classroom aid, T3 Games, an educational product that includes a set of plastic overlays that can be placed on a large touchscreen tablet. Players follow the T3 narrator's spoken instructions as they work through forty puzzles and mazes, using their fingers to interpret the raised-line and textured graphics. Playing T3 Games builds tactile literacy, the ability to perceive and decode figures through the sense of touch. Starting with basic shapes, T3 games introduces concepts and vocabulary, then challenges players to demonstrate their skill by finding and pressing on features of the increasingly complex and detailed tactile game boards in response to T3 Narrator's questions. T3 games was developed by a team including a graphic designer, an interaction designer, a programmer, and a teacher.
Innovation by Design Awards
APH’s Monarch has been named a finalist in Fast Company's 2024 Innovation by Design Awards. Celebrating thirteen years of innovation by design, the 2024 honorees include nearly five hundred projects, products, and services that solve the most crucial problems of today and anticipate the pressing issues of tomorrow.
The Monarch is a refreshable multi-line and tactile graphics device that, for the first time, delivers Braille and tactile graphics simultaneously. The Monarch has the capability to connect with a visual display for collaboration with sighted teachers and peers.
Educational Technology Survey
https://nfb.org/legal/surveys
The NFB is gathering information regarding the accessibility of educational technology used in our nation's schools (kindergarten through graduate level). If you are a student, parent, teacher, or administrator who uses screen access software or other accommodations to participate nonvisually in educational programs or services, or if you are the parent, teacher, or administrator of someone who does, please complete the Education Technology Survey once a semester and contribute to this important research.
by Cassie McKinney
From the Editor: With the passing of Penny Duffy on June 25, 2024, the blind community lost a beloved friend and tireless supporter. NOPBC President Cassie McKinney shares this heartfelt tribute.
Sometimes it seems that we are unable to share how much we care for those around us or express the true impact they have on our world until they have left us. When we come face to face with the loss of a friend, colleague, or loved one, we reflect on the magnitude of who they were and the void they leave behind.
Penny Duffy was one of the most caring, outgoing, and kind-hearted people I have ever met. Her love for her family and her desire to change how society viewed and supported blind people were evident in every part of her life.
I met Penny back in 2011, when she and her daughter Abby came to their first National Federation of the Blind of New Hampshire Convention. That convention was the spark that lit the fire in Penny. She quickly became active in the organization. She was hungry for our philosophy and for the opportunity to be around others who shared her passion. Although she started by looking for support for her daughter and herself, she soon shifted toward wanting a way to give back.
Penny was always eager to be involved in activities such as Washington Seminar. She became very active with the National Organization of Parents of Blind Children (NOPBC) on the state level and on the national level as well. She was elected to the NOPBC Board of Directors and served there for many years.
Much can be said about Penny's leadership, but I want to focus on another side of Penny that many people knew, the depth and power of her friendships. If you spent much time with Penny, you know she had the biggest heart ever, and she formed friendships very easily. She loved to celebrate life events with others—a new job, a marriage, a new baby, or a new NFB chapter. She was always so happy sharing in these moments! She offered compassion when it was needed, and she had a wonderful way of seeing the positive in every situation.
One of Penny's greatest loves was going to the National Convention of the National Federation of the Blind. She loved meeting new people, seeing old friends, and just being in a space with others who shared her passions. She always encouraged people to go to convention, and she would highlight some of her favorite reasons why it was important.
After fighting the most courageous fight she could, Penny passed away peacefully, surrounded by her beloved family, on June 25, 2024, just days before this year's convention. Those who were close to her knew the struggles she had faced over the past few years. Though the loss was very hard for all of us, Penny's medical battle could not go on. Penny will always be with us, guiding us as we continue the work that was her passion. Her legacy will live on.
The NOPBC is establishing a fund in Penny's memory to help families attend the NFB National Convention. Donations can be made through our website, nopbc.org. Please note that your donation is for the Penny Duffy Memorial Fund. Penny's search for support for her daughter brought her to our organization, and we came to love her and be loved by her. Now, through this memorial fund, we can show our love and support to others.
In the days following Penny's passing, many people shared their memories on social media. Melissa Riccobono wrote this tribute to our wonderful friend, who we will miss forever:
"Penny, my friend, I, and so many others, already miss you! Your laugh. Your love of life. Your gentle heart, always giving. You were, and I believe still are, truly a helper. Someone who always wanted to give and to say yes! How many board meetings were we in together where I, or someone else, would say to you, 'Penny, you cannot, and should not, be doing everything! We know you love to say yes, but maybe, this time, you need to say no.' And you would laugh and say, 'I know, but I just want to do it all!' And you always did so much! Even when your health meant you were forced to say no more often than you would have liked, you still kept your eyes on the prize and said yes to the things that truly mattered to you. Working kept you going forward. Giving gave you a reason to fight as hard and long as you could.
“Penny, I believe that heaven, for you, is a place not exactly of rest. Yes, it is a place of peace, where you are no longer in any pain. But I believe it is also a place where you can finally, without hesitation, say yes with your whole heart and spirit, and get back to doing the work you loved most: helping your family, your friends, and anyone else you could, in all the ways you now can. Giving, helping, and saying yes are ways I will keep your memory alive for as long as I'm here. And I know you and I will be able to work together again when next we meet.
“My love to your family! My love to you. I won't say rest in peace, because, as I said, I can't imagine you ever really resting. But I will say, work without pain. Work without any limits on your energy. And we'll be down here working alongside you to change our little corners of the world for the better a little at a time. That's how we'll keep your light burning.”
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