Volume 40, Number 3 Summer 2021
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 © 2021 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]
FEATURE
A Mother in Wonderland: Securing Services for My Blind Child
by Carla Keirns
TEACHING AND LEARNING
Supporting the Person, Not the Diagnosis: Blindness and Additional Disabilities
by Carol Castellano
The World Is Our Classroom
by Michelle Murrey
Clear Skies
by Charles Pat McKenna
ROADS LESS TRAVELED
Running toward the Danger
by Gloria Rodriguez
The Day I Touched the Sky
by Sara Luna
Inclusion in the Theatre: Embracing Your Passion for Performance
by Elizabeth Rouse
Thinking Fast for a Show: How I Conquered My Anxiety to Perform on Stage
by Precious Perez
RESEARCH
Access and Engagement: The Effects of the Pandemic on the Education of Blind, Low-Vision, and Deafblind Students
by L. Penny Rosenblum
PERSPECTIVES
Super Mama: Cheering for My Blind Daughter
An Interview with Vicki Fant
Will He Still Be Here at Nightfall?
by Anonymous
REVIEW
Ten Ways to Hear Snow
by Cathy Camper
Reviewed by Deborah Kent Stein
WHAT'S HAPPENING?
Touching The News
by Lee Kumutat
STEM EQ: Origami and Spatial Thinking
by Andrea Cataquiz
Share Your Stories
Congratulations!
Report of the NOPBC Conference at the 2021 NFB National Convention
by Carlton Anne Cook Walker
Announcements
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 Carla Keirns
Reprinted from Braille Monitor, Volume 63, Number 10, November 2020
From the Editor: Carla Keirns is an assistant professor of medical ethics and palliative medicine at the University of Kansas Medical Center in Kansas City, Kansas. She serves on the Blind Task Force of the Missouri Department of Elementary and Secondary Education and on the board of the National Organization of Parents of Blind Children. A slightly different version of this article first appeared in Health Affairs 2020, Vol. 39, No. 10, pp. 1832-1836. The published article is archived and available online at www.healthaffairs.org/. Reused with permission from Project HOPE/Health Affairs.
It was my son's first Halloween. It turns out that 3 p.m. on October 31 is an excellent time to get in to see a high-demand pediatric specialist. My son was fourteen weeks old to the day.
We didn't have any reason to think there was anything wrong with my son's eyes except family history. I wore glasses as a little baby, cute silver-wired ones with frames that wrapped around my ears. So did my sisters. My husband did, too, though his had heavy black plastic frames, a strong contrast with his blond hair. Both of my sisters had surgery for crossed eyes before they were a year old. I knew the reason to do that for a newborn was so that the eyes and the visual processing areas of the brain had a chance to develop in concert.
So there we were, my baby boy with blue eyes and snow-white hair in a gray footed one-piece, mesmerized by the doctor's collection of light-up toys for watching babies fix, track, and move their eyes. The doctor came and looked at him and then said he would be back after my son's eyes were dilated.
After thirty minutes we were ushered back into another exam room. My son sat on my husband's lap while the doctor examined him.
"He's blind," the doctor said.
What?
I remember the rest of the conversation as a competition between the doctor's words and my racing thoughts. It was like being on the cartoon Peanuts with the adult's voice saying, "Wah, wah, wah." He told us he would refer us to the New York State Commission for the Blind.
"Will he read? Will he drive? What will happen to him?" I had a million questions, but mostly I was perplexed by the word blind. He was only three months old. He didn't pay much attention to things around him, but he could clearly see.
In the next couple of days, I started reading. By the end of the week, my sister threatened to take away my internet privileges.
I learned what blind meant. The Snellen chart, developed by Dutch ophthalmologist Herman Snellen in 1862, has a large letter E at the top, which is the 20/200 line. The next line is 20/100. If you can see the E but not the rest, you are legally blind.
But was my baby blind? There was no way to know for sure; it would be years before he could tell us what he could see.
My son is the only child of two academics. I am a physician and health policy scholar. My husband is a geographer and specialist in disability policy and universal design. Despite our professional training, the lines between what services are provided through health insurance versus educational mandates versus private charity were very confusing. We just wanted to know how to help our baby.
In those first months, neither our eye doctor nor our pediatrician mentioned "early intervention," a term for the services and supports that are available to babies and young children with developmental delays and disabilities and to their families. My husband was teaching a class on the history of disability that semester, and a pediatrician taking his course told us to sign our son up right away. These services are funded under the Individuals with Disabilities Education Act (IDEA), which in 1975 guaranteed access to a free appropriate public education (FAPE) for all children with disabilities. I knew a little about that history, because in 1972 my older sister was denied access to kindergarten in our local public school. She has what is now called high-functioning autism. My mother remembers being told, "We have no programs for a child like yours."
Is disability policy health policy? Is it education policy? Is it labor-force policy? Or is it social welfare? From the perspective of a family, these distinctions make little sense. I have subsequently found they are similarly confusing to congressional staffers. For children with disabilities, disability policy is education policy, and we were clueless. I was like Alice in Wonderland, lost in a place where I understood the words people spoke, but they made no sense to me.
Services for disabled children are more fragmented and confusing than anything I had ever run into in health care. Your health insurance covers some things, typically those things that prevent and treat the disease that causes your disability. The things you need in order to work, go to school, or function in your daily life as a consequence of your disability generally are not covered by health insurance. Instead, you are in a whole new world. If you are between birth and age twenty-one (or older, in some states) and need services and technology to go to school, they might be covered as part of special education under IDEA. If you are age eighteen to sixty-five and need them to be able to work, they might be covered by your state vocational rehabilitation agency. If you are over sixty-five, your state or local agency for the aging might pay for something that is needed to maintain your independence so you can stay out of a nursing home. If medical insurance, educational programs, vocational rehabilitation, social services, or aging agencies won't pay for what you need, maybe you can pay for it yourself, get a grant, or try crowdfunding.
My now seven-year-old son needs a magnifier to do his homework—and, in the face of the coronavirus disease 2019 (COVID-19) pandemic, he needs it for virtual school all day long. I don't mean one of those handheld magnifiers you can find for $1.99 or a paperweight "dome" magnifier that you can get for twenty or thirty dollars. He needs a full-page, electronic digital magnifier so he can see and complete his worksheets for school. They run from three thousand to six thousand dollars. In the past few years I have been to Washington, DC, to lobby for a tax credit for the purchase of "access technology" such as Braille displays and digital magnifiers. After I show the cute picture of my first grader and a flyer for the five thousand-dollar device he needs, the first question I always get from congressional staffers is, "Doesn't health insurance cover that?" It doesn't. Even though it's prescribed by a doctor, it's not considered a medical device because it doesn't treat his disease.
Early intervention for children with disabilities is a program of the federal Department of Education, administered by the states. Six weeks after we saw the eye doctor, two women came to our house and played with our five-month-old son for about four hours. One was a special education teacher, and the other was a teacher of students with visual impairments. Two weeks later we received a thick envelope with a twenty-two-page report that pronounced that his cognitive development was in the second percentile for his age, two standard deviations below the mean.
Our son needed support from a teacher of students with visual impairments and a certified orientation and mobility specialist. These are education professionals, not health-care providers, and, for children, their services are provided through schools and education agencies.
Through early intervention, a teacher of the visually impaired came to our house twice a week. She explained that if we could optimize what our son could see with glasses, surgery, and therapy, he might avoid developmental delays that are the predictable result of not being able to see and interact with one's environment.
At age three, children move from early intervention programs to school-age programs covering children ages three to twenty-one, and they must be evaluated again by their school district to see whether they qualify for special education and related services. While early intervention has a dedicated funding stream from federal, state, and local agencies, special education for school-age children is only partly federally funded, and it competes for resources with all of the other programs public schools need and want to provide. When IDEA mandated school districts to cover the specialized instruction and services required for a child to receive a free, appropriate public education, including speech therapy, physical therapy, occupational therapy, and assistive technology, the law included a promise to states and school districts that the federal government would cover 40 percent of the "excess" costs of educating disabled children above and beyond what the school spends for students without disabilities. At the time it was estimated that it would cost twice as much per student to educate disabled children, so the funding formula was tied to average per pupil expenditures for all students. Congress has never appropriated funds to cover more than 21 percent of that average expenditure amount for each student with disabilities, according to the Congressional Research Service. The National Education Association has calculated that in fiscal year 2019 IDEA funded 13.8 percent of average per pupil expenditure for each child covered by IDEA.
My son's birthday is in July, and it takes about three to six months from the time of a request to evaluate a child for special education and start providing services (summer months don't count, in our experience). So to continue to receive supports for his visual impairment after his third birthday, we had to contact our school district in January.
The staff was professional and outlined a plan. Review of records. Classroom observations. Evaluations. Then, if he qualified, an Individualized Education Program (IEP). It seemed to unfold in slow motion. Months went by. We submitted records from his doctors and his preschool. He came to the district's preschool and matched plastic bears to cups of the same color. A teacher of students with visual impairments came to daycare to observe him. The daycare director told me she stayed twenty minutes.
In April we met to review his evaluations. Yes, he had a disability that impacted his education. He qualified. Next step was to write an IEP.
But something about that meeting bothered me. I can't say quite what, but it might have been the turtle. The teacher had brought a picture from her classroom observation of a coloring book page of a turtle on which my son had scribbled with a green crayon. There was no evidence of even an attempt to color in the lines or if he saw them at all. She said, "All the other kids' pictures looked the same." He had been evaluated in August, nine months prior, by the early intervention team, and this teacher appeared to have done no other formal testing besides the brief observation. The only data she brought was a two-year-old's scribbles. It seemed to me that the school staff were underestimating his needs.
The year he turned two, my son had considerable variation in his visual acuity measurements from examiner to examiner, day to day, and by time of day. He'd been seen by an ophthalmology team at the National Eye Institute as part of a research study and by a handful of other ophthalmologists and optometrists. There are different tools for testing the visual acuity of babies, such as a version of the eye chart with pictures instead of letters, a hand, a bird, a birthday cake, a phone. A rotary dial telephone. I asked the examiner how many kids have ever seen a rotary dial phone. She laughed and said, "I give credit for any consistent answer." Kids usually thought it was a spaceship.
Another test, using a series of cards with parallel black and white lines in progressively narrower configurations, suggested a visual acuity of 20/80. None of my son's tests using an eye chart were better than 20/100; most were 20/200 or worse, from 20/500 to 20/1000. The exam done by an ophthalmologist during the IEP evaluation process found him to be 20/200 by use of the picture eye chart. The school staff didn't perform their own test.
It was a beautiful Thursday in May. The special-needs parent blogs all said to bring snacks, so I did. I met the school's teacher of students with visual impairments in the school office. I brought a drawing of a rainbow to go with the turtle. A few weeks before, my son’s occupational therapist had used markers to outline a rainbow and had given him bingo dotters to fill in between the lines. He did so enthusiastically—on the right two-thirds of the page, indicating classic neglect of his left visual field. If we're going by the preschool art, both showed he has vision loss affecting his performance.
One by one, the rest of the team arrived—several staff from our new school district, several staff from the preschool for blind kids that my son was attending, and me. My husband was at work, and I didn't bring anyone else.
The school team handed out the nineteen-page draft IEP. Near the bottom of page four it reported the visual acuity of 20/80 from the National Eye Institute study the previous year. There was no mention of the most recent eye chart assessment of 20/200. On page seventeen was a special form for children classified as blind and visually impaired, which requires the team to document whether the child needs Braille use and instruction. The team checked "No." The section below that where they were supposed to explain why was blank.
We were offered a spot in the school district's preschool based on my son's visual impairment, but we were denied specialist services such as a teacher of students with visual impairments, instruction in Braille, an occupational therapist, or a certified orientation and mobility specialist. I was perplexed. How do you qualify a child for special education due to his visual impairment but then deny him all of the specialized services that are designed to accommodate his vision loss?
When I questioned the plan, I was told that it was the last day of school, and if I didn't agree, we could meet again in August. But if he didn't have an IEP in place on his birthday in July, he would lose his final few weeks of early intervention services.
I knew the school's clinical assessment was wrong, but no one would listen. I didn't know what to do, but I knew why it mattered. My younger sister did not read at grade level until she was twelve. We didn't understand why she wasn't reading until she failed the first grade—twice. It was probably a milder form of what my son has. It took her four years to catch up. I was determined not to watch that happen again.
I talked to the staff of my son's preschool, and they were almost as shocked as I was. We were referred to our state vocational rehabilitation agency for the blind. Everyone said to call a new IEP meeting in August, but none had a good answer for summer services before then.
I called the federal Department of Education's Office of Civil Rights and was advised that they could not help until he turned five. They referred me to my state Department of Education's Special Education department, and their compliance staff advised me to request an independent educational evaluation. I called our school district again and was told to call back in three months.
What was I supposed to do then? Hire a lawyer for my three-year-old and sue our school district? Privately pay for the preschool for blind kids, for assistive technology, for therapies?
I decided that if I fought the district and won, what I would get was the services of the teacher for students with visual impairments who didn't think my son needed any help. And it would take a year, or two, or ten. It would cost more than paying myself to enroll him in our local nonprofit preschool for blind kids, where I could trust that he would get what he needed. So we stayed at that preschool for three more years.
When the time was approaching for kindergarten, we were advised to move to another school district. Several other districts in our city have better reputations for special education than ours. Ours is considered kind of middle-of-the-pack—good for some diagnoses, but it's a smaller district and less familiar with "low incidence disabilities."
This time I knew it would take six months to put together a plan with the school, so a year ahead, I started planning. I began going to special education workshops run by my state Parent Training and Information Center and by a company called Wrightslaw. I started reading and going to conferences, and I joined Facebook groups for parents like me. In one group, I wound up messaging with a teacher of students with visual impairments who now works as an advocate. After reviewing our old IEP and my son's evaluations, she had ideas for new assessments and a strategy for asking more of the school.
I was still terrified.
One day my little boy overheard me talking to a family member about whether I needed to hire him a lawyer.
"Mommy, why do you need a lawyer?" he asked.
"I don't need a lawyer," I said. "You need a lawyer."
"Mommy, why do I need a lawyer?"
I explained how a lawyer advocates for you to help ensure that your rights are protected. I explained that he would need help to learn to read because of his eyes. He said, "Mommy, I want my lawyer to help me get everything I need." I paid the retainer the next day.
This time when we went to the school district to ask for an IEP, I was not alone. I brought the advocate, who knew what to ask for. I brought the attorney, who knew how to get it. When my son entered kindergarten, we had a plan that included all of the services he had been denied three years before.
Schools don't see many blind kids. That often means that they don't know what they don't know. Blindness and visual impairment severe enough to require special education are estimated to be found in less than 0.4 percent of the more than six million school-age children receiving special education in the US, according to the 2019 Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act.
When I asked one of my son's teachers of blind students what usually happens to children like my son, she said, "I don't want to tell you." She didn't have to. We know what happens. Kids like my son, legally blind but with substantial usable vision, are often okay through kindergarten—like my sister. Some make it through first grade and even second. In third grade the reading demands increase, the font sizes get smaller, and they can't keep up. Staff or families realize at eight, nine, or ten years old that the child needs more help. But by then they are years behind. Their friends are going on to reading Harry Potter, and they have to go back and learn their ABCs, now in Braille.
The core problem goes back to that decision by Congress in the 1970s to place much of the responsibility for providing disability services to school-age children on schools. It makes a certain amount of sense. Not all kids have health insurance. Children spend the majority of their waking hours in school. Public schools can provide universal access. They might not have all of the expertise one would need to assess and manage all children with all kinds of disabilities, but they can receive federal and state funding to support specialized instruction, related services, and assistive technology.
But not all schools are created equal. According to the US census, in fiscal year 2016 New York spent $22,366 per pupil and Utah spent $6,953. Where we live, at the border of Kansas and Missouri, the states spent $9,960 and $10,313, respectively. Schools face funding shortfalls along with challenges finding experts for less common disabilities. And Congress has never met its promise to fund the educational mandate of special education at 40 percent of the "excess" costs of educating special education children. In March 2019 Rep. Jared Huffman (D-CA) introduced the IDEA Full Funding Act in the House, but there has been no further action since then.
In my role as a special-needs mom, everyone told me that my job was to advocate for my child. Of course I would advocate for my child. Who wouldn't? The better question is, who cannot?
Navigating the fragmentation of services, the complexity of eligibility rules, and the sometimes adversarial processes of determining appropriateness of services is more manageable for those with time, money, education, and expertise. This means that the likelihood that a child will receive the medical, educational, and rehabilitative services and equipment they need to improve their functioning and start their education on a level playing field can depend on their parents' situation and supports. This is, of course, true of our medical and educational systems as a whole, but for disabled kids and their parents, the stakes are even higher.
The COVID-19 pandemic has added a new wrinkle to our story, only underlining the degree to which we rely on schools for services for children with disabilities. When schools closed in the spring because of COVID-19, my son's school provided remote occupational therapy and remote Braille instruction until the end of the school year. We worked by phone, by video, and in person over the summer with Braille teachers we paid out of pocket, and we used our health insurance for virtual occupational therapy.
Despite our best efforts, we could not duplicate the educational benefits of the services he was getting during the year. My son has lost most of his kindergarten year's gains in Braille, and there is no way he will be able to read Braille at a first-grade level this fall. And with school at home for the foreseeable future, he still needs that expensive digital magnifier, among other supplies, so he can do his schoolwork at home.
So what can parents do? They can educate themselves. Seek out support groups of other parents. Take advantage of Parent Training and Information Centers in their states, as well as Family Voices/Family to Family agencies that support children with disabilities and their families. But it's critical to recognize that in an unequal society, putting the burden on parents to advocate for their kids further worsens inequalities.
What can policymakers do? They can fully fund IDEA. Reconsider where the boundaries are being drawn between therapy and education and between devices that are paid for by health insurance and those paid for by schools, assistive technology programs, vocational rehabilitation agencies, and private charities or family resources. Why is Medicare classifying digital magnifiers and other high-technology visual aids in the same category as eyeglasses? The reason disability-related assistive technology is so difficult to get, prices are so high, and the market is so small is that there is no reliable funding stream for this technology to create a sustainable market.
I study health disparities, and I think that educational disparities are equally if not more likely to lead to premature disability and death. It's not my son I'm worried about. I've met a lot of mothers who have become full-time advocates for their kids. I've met a lot of adults with disabilities who didn't get the help they needed to learn to read or do math or have a fair chance at independent living. I've met attorneys and advocates who are fighting systems designed not to give kids what they need to meet the goal of the Individuals with Disabilities Education Act: "to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living." It should not take a mom who is a doctor, or a lawyer, or tens of thousands in disposable income to be able to get a free appropriate public education and the supports a disabled child needs for basic access to education, employment, housing, and an open future.
The issue: Much of the responsibility for providing disability services to school-age children rests on schools, and parents of children with disabilities must navigate complex rules about which services are provided by schools or covered by health insurance and which must be paid for another way.
Applegate, J. Countdown: School Districts That Spend the Most Per Pupil and States Ranked by School Funding, Columbus Business First, 2018 May 24, https://www.bizjournals.com/columbus/news/2018/05/24/countdown-school-districts-that-spend-the-most-per.html
Corn, Ann L., Spungin S. J., Free and Appropriate Public Education and the Personnel Crisis for Students with Visual Impairments and Blindness. (2003.) University of Florida, Apr. http://copsse.education.ufl.edu/copsse/docs/IB-10/1/IB-10.pdf
National Education Association. IDEA Funding Gap by State, FY 2019, (2019.). Mar 22. http://www.nea.org/assets/docs/IDEA-Funding-Gap-by-State-FY-2019.pdf
US Department of Education, 41st Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2019, (2020.) Feb., https://www2.ed.gov/about/reports/annual/osep/2019/parts-b-c/41st-arc-for-idea.pdf
by Carol Castellano
From the Editor: Carol Castellano's commitment to blind children and their families runs long and deep. She has served as president of the NOPBC, and she is the founder and former president of the New Jersey Parents of Blind Children (NJ-POBC). She is the author of Making It Work and Getting Ready for College Begins in Third Grade. This article is based on a presentation she gave at a recent NOPBC webinar.
I am the mother of a now-grown blind daughter who began life with multiple disabilities due to extreme prematurity. In addition to becoming blind, she was seriously undersized. She had muscle weakness and developmental delays. At one year of age she could not sit up; at age three she could not chew solid food; at five she still could not talk.
Hopes for our daughter's future were not high among the many professionals in our lives. She was even rejected by a special-education preschool that told us her needs were too great.
There we were, with an extremely delayed blind child who was perceived as so far gone that not even special education could deal with her. People were giving up on our daughter. They told us we were in denial for having hopes for her future.
I tell you all this to let you know that the subject of blind children with additional disabilities is near and dear to my heart. My daughter is an adult now, and she still has a few "prematurity leftovers" as we call them at our house. However, with a lot of hard work and with the good team we finally managed to assemble around her, she was able to develop in every area.
The term "blind child with additional disabilities" can mean countless things. The child might be totally blind or might have partial vision; the additional disabilities could be motor, cognitive, neurological, or medical. The disabilities may be part of a syndrome, and they may be mild or severe. Because so many possible combinations exist, I will offer some general ideas that apply to all kids. I hope that some of these ideas will help with your child's development.
Regardless of which conditions our kids have, it's important for parents and teachers to have a positive approach and to keep their expectations high. A can-do attitude can bring about great results. Please remember that the presence of additional disabilities does not mean that the child will never learn to read, move independently, use a computer, or learn other important life skills. Keep all the doors open for learning and developing.
One of the most important things we can do for our kids at home and at school is to create a stimulating environment. A stimulating environment is one filled with things that will interest the child, things that will lead the child to touch and move and explore.
Watch small children as they explore without intervention from adults. When they come across an object, they pick it up, turn it around in their hands, put it to their mouths, pass it from one hand to the other, bang it on the table, drop it, or throw it. Without conscious planning they do what comes to them naturally. In the process they are learning about the characteristics of the object, and they are gaining this information themselves. No one is telling them about the object or explaining how it should be used. We call this exploration play. Play is how children learn.
Our blind kids with additional disabilities often need a bit of help with this stage of development. Maybe they are very passive or physically weak. They may seem totally uninterested in the things around them, off in a world of their own. It is very important to get exploration going, and a stimulating environment can make it happen.
You might have to experiment to find out which kinds of things interest your child. Your child may like certain textures or materials or sounds. The idea is to make items available that are irresistible so that your child can't help but touch them.
Some children benefit greatly from the Active Learning approach created by Dr. Lilli Nielsen. I highly encourage you to look into Lilli's writings. She suggests a wealth of materials and ideas that can get your child going. Lilli Nielsen's best-known technique is the use of the Little Room.
The Little Room is a three-dimensional frame set upon a thin sheet of wood called a Resonance Board. The frame is high enough to allow the child to sit upright, and the child also can lie on the floor. An assortment of objects is hung from the top and sides of the frame—things that will make sounds if they are touched or moved even slightly. Some examples include metal measuring spoons, plastic cups, strings of beads, or bells. For further information on how to select and hang objects in the Little Room, visit https://activelearningspace.org/equipment/purchase-equipment/little-room.
The Resonance Board forms the floor of the Little Room. A low rim beneath it on all sides raises the board slightly above the floor. It will echo whenever it is touched by a little foot or hand.
Now the stage is set—the baby or child is placed inside the Little Room on the Resonance Board. The dangling items have been arranged so that the child's tiniest movement will bring them into contact with something that makes a sound.
I have seen babies and children who have been almost completely passive come to life in a Little Room. First they make random movements. By chance they touch something and make a sound, or they make a sound by moving a foot or hand on the Resonance Board. Eventually they move purposefully to make those sounds occur! I've seen a child go suddenly quiet and intent, and then . . . the smile! This is the beginning of intentional movement and play, and this is exactly what we want to happen!
Our goal is to create an environment that encourages the child to touch, move, explore, and learn. When I say learn I am talking about self-directed learning. Self-directed learning is quite different from adult-directed training that fills the child with someone else's knowledge. Lilli Nielsen emphasizes that the desire to move and touch must come from the child's own brain, not from the mind of an adult.
Lilli Nielsen suggests many objects that can stimulate movement and action in blind children. Offer a string of beads to be clattered on a Resonance Board. Experiment with things that vibrate. Give the child an old pocketbook with lots of snaps and zippers.
Here are some more ideas parents and teachers can use to get the child to focus attention and become engaged in an activity:
All of these experiences can motivate a child to pay attention, touch, and take action. Learn which items work best with your child.
Make sure, of course, that whatever you set up does not overwhelm the child. We want the response to be enjoyment, not overload. If the child shuts down, pay attention!
Speaking of overload or shutting down, another approach that can assist many of our children in their development is a branch of occupation therapy (OT) called sensory integration training. Sensory integration training seeks to enable the child to integrate and interpret the information that comes in through the senses.
Some children have trouble using the information that pours in through vision, touch, hearing, and the kinesthetic senses. They become overwhelmed, and they may shut down or become distressed and agitated. When sensory integration takes place, the child is able to feel comfortable and respond appropriately. Sensory integration therapy can be helpful for children with conditions that impede playing, paying attention, feeling comfortable in unfamiliar environments, and interacting with others. It can help a child who experiences other sensory integration issues that create obstacles to learning. (For more information, see "Maybe It's Not Because They're Blind: How Sensory Integration Exercises Can Help Our Children," https://nfb.org/images/nfb/publications/fr/fr38/4/fr380407.htm.
You have probably been introduced to developmental charts by your child's early intervention specialist or other professionals. Developmental charts can help parents and teachers figure out the Next Logical Step to work on in the child's development. The chart includes categories such as gross motor development, fine motor development, speech, social-emotional development, and self-help. Parents can choose a category and see where their child stands. Maybe the child has mastered the first two items in one category and the first four in another. You can work on the third item in Category A and the fifth item in Category B. These will be the Next Logical Steps.
It is easy to feel overwhelmed when your child has a lot of developmental needs. Developmental charts can help parents recognize the areas where their child is making progress. The chart can help parents feel less overwhelmed, taking things step by step.
Sometimes it is helpful to observe other children who are your child's chronological age and who are at your child's developmental stage. What activities are they doing? Can you set up an environment that could help that activity occur for your blind child? For example, when my sighted son was two, he climbed into one of our kitchen cabinets and began joyously banging on the pots and pans. I realized that our five-year-old blind daughter had never played in the cupboard. I encouraged her to get into the cupboard with her brother so she could enjoy that developmental experience, too.
You might have noticed that I referred to your child's "chronological age" or "developmental stage." In this organization we talk a lot about the need for blind kids to have age-appropriate knowledge and age-appropriate skills. For our blind children with additional disabilities it can be helpful to think in terms of "stage-appropriate" knowledge and skills. Regardless of chronological age, your child might be at a two-month or two-year level in one developmental area and a four-month or four-year level in another. Look for activities that might work for them at those age levels in various areas and go from there.
All of these learning opportunities are important because they can help our kids learn to gain information about the world for themselves. They can learn to gather information through all the senses and abilities available to them. By coming into contact with interesting objects and making things happen when they touch them, our children begin to see themselves as active agents in the world. They become doers, not just done-toers. (Credit for that phrase goes to early childhood O&M instructor Joe Cutter.) For more ideas on how to get your child moving and exploring, I encourage you to read Joe Cutter's book Independent Movement and Travel in Blind Children: A Promotion Model (available for $30 from the National Federation of the Blind's Independence Market at 410-659-9314.
Blind children—and especially blind children with additional disabilities—are very vulnerable to being acted upon. People grab them, move them, steer them, guide them, restrain them, or push and pull their hands. We want our children to be active and not passive in their own lives. We want them to develop the ability to make choices, to hold the expectation that they can make decisions. We want them to have some control over their environment and their lives. We want them to expect that what they feel and what they want (or don't want) have meaning and value.
You probably know that blindness in children is a "low-incidence disability." This means that there aren't many blind children out there. When we add additional disabilities into the mix, we get into smaller and smaller categories. The chances are that your school has never seen anyone quite like your child.
In the NFB we have a pretty unique approach to the education of blind children. Sometimes when school officials hear our approach, they almost fall out of their chairs. For starters, we tell the team to forget that the child is blind. That's the part that makes them fall off their chairs, because many times the child's blindness is all they can see! We tell them to take blindness out of the equation and look instead at the learning profile of the child. What would you plan for that child if he or she were not blind? This approach can keep decisions from being based on low expectations and incorrect assumptions about the abilities of blind people. It is all too easy to shortchange our kids.
We also tell the team that blind children need and deserve the same information and education their sighted peers receive. We want them to develop in all the "regular" areas—motor, speech, concepts, self-help, etc. Furthermore, we want them to develop in the areas specific to blindness, learning how to get information nonvisually or with limited sight. They need to learn to explore with their hands, to listen with attention, and to use their residual eyesight effectively. They need to develop listening skills, memory, and mental mapping. They will need to learn to read Braille or large print, to travel with a long white cane, and to use access technology. These skills help ensure that our blind children will have full access to the education that is available to their sighted classmates.
We tell the schools that blindness alone should never determine whether a student can be expected to learn a certain subject or master a particular skill. Educational plans for a blind student must be based on the child's learning level or developmental profile, not on how much eyesight they have.
It can be hard for educators to untangle the strands. It can be hard for parents, too, especially at the beginning. We certainly don't want additional labels plastered onto our kids. The tendency is to blame everything on their blindness—speech delays, motor delays, and everything else. The assumption that blindness is the problem can keep the child from getting needed services in the areas that actually cause or contribute to delays.
The tendency to underestimate the child's abilities based on blindness can make it difficult to get a fair evaluation. The child's real aptitudes can remain hidden. Placement decisions can also be subject to negative preconceived notions about blindness. Placement decisions must not be based on eyesight alone. Talk to the team about what they would plan for this child if he or she were not blind.
For school purposes, it can be helpful to do the following:
For the approximately one-third of blind students who have no additional disabilities, this approach means that academic goals and expectations will be the same for the blind child as they are for the sighted children in the class. This parity in education is possible when the blind child receives proper training in the specific skills and tools of blindness such as Braille, cane travel, and access technology. Furthermore, materials and the presentation of information must be fully accessible.
Another third of blind children has a moderate additional disability that affects their education in some way. For these students we need to modify academic goals as necessary, just as we would for sighted students with comparable disabilities. Again we would add blindness skills, accessible materials, and presentation in accessible formats.
The final group of blind children has severe additional disabilities. For these children we plan more individualized or developmental IEP goals, just as we would for sighted children with similar learning profiles. As always we would add blindness skills and materials and presentation in accessible formats.
We must set academic or developmental goals for all blind children just as we would set them for a sighted child with a similar learning profile. Then we add the skills, tools, and materials that are specific to blindness. Decisions about what the blind child will learn and where they will learn it should not be based on their visual acuity.
Incidentally, Braille should be included in the education plan, even for children with pretty serious additional disabilities. If a sighted child with a similar learning profile would be placed in a literacy program, the same applies for the blind child. For all our kids, accessible materials can allow meaningful inclusion in all activities.
Every child has a personality. Blind children with profound additional disabilities have their likes and dislikes; their favorite toys, games, songs, and outings; their ways of showing excitement, irritation, curiosity, and love. Kids who cannot communicate with words may use a variety of sounds or movements to get your attention or to respond to a situation. Make sure teachers understand how your child communicates and what their various sounds or movements might mean. This information can help keep the child from being underestimated by those outside the family. Augmentative communication devices can be adapted for blind kids.
I believe the IEP of every blind student should include an explicit goal of independence. The program should be set up so that the student can become more independent each year in every possible way. Our kids are vulnerable to overprotection and learned helplessness. They need to have the same freedom and autonomy as sighted children with the same learning picture so that they can develop the same level of independence. Make sure teachers provide opportunities for the blind child with severe additional disabilities to make choices whenever possible and to act upon the world, not always to be the one acted upon.
In every area of life, from development to play to self-help to academics, approach teachers and other professionals with a positive attitude. Keep expectations high, and keep all the doors open for development and learning.
by Michelle Murrey
From the Editor: Living through a pandemic has transformed each of us in small and profound ways. In this article Michelle Murrey describes her family's choice to step away from the traditional school setting to discover a world of possibilities through homeschooling, bringing core curriculum and extended core curriculum (ECC) goals to life through daily adventures.
In 2020 the world changed. School went virtual. Employees started working remotely. Restaurants shifted from dine-in service to delivery. During the pandemic creativity, flexibility, and stability were critical to survival.
Just as the world experienced significant changes in 2020, so did my family. In early March we celebrated with family and friends to honor my parents' fiftieth wedding anniversary and my mom's forthcoming retirement. A week later everything changed. My daughter's Pre-K program closed. My mom's job ended abruptly. My work trips were canceled. We moved—twice.
There was a lot of upheaval in our home, especially for my five-year-old daughter. We did our best to accommodate Zoom calls for occupational and speech therapy. We went to the park as much as possible, and we learned to be flexible with what a school day and workday meant.
In the fall of 2020, when it was time for my daughter to start kindergarten, we tried a virtual school option for a semester. It seemed to be an adequate option, but slowly I saw the energetic spark in her fade. Her frustration grew as she dreaded every Zoom call, every virtual therapy session. And my anxiety increased as I advocated for her needs in a new district that was simultaneously figuring out how to provide an education for thousands of children during a pandemic.
Taking stock of our family's situation at the end of 2020, I decided to discontinue the virtual school for the remainder of my daughter's kindergarten year. It was a gut-wrenching decision, because leaving the district meant that we lost all possibilities of receiving special education support. But our family's physical, emotional, and spiritual health was more important than trying to make the best of a difficult situation.
Although it was a daunting challenge, we took the plunge in January 2021, and we have not looked back since. It took creativity and networking to find the tools we needed, but we found a community of people willing to walk with us on this new adventure.
Homeschool offered the most appropriate fit for my child ever since she was three years old. She has the time to practice skills repeatedly until she masters them—in her own time. Opportunities to refine mental mapping, navigation, the use of cardinal directions, and cane technique abound. Daily life offers moments to learn math through cooking, technology through AI devices, Braille displays, and an iPod. Literacy comes through audiobooks, podcasts, and trips to the library that complement her interests. Science experiments occur in our bathroom sink, in flowerpots, on our deck, or along trails at the state park.
Some days, PE class means my daughter riding her Micro Scooter for hours on our street. She learns to balance, brake, move backward, turn, and orient. On other days we go to the local park to travel the trails at my daughter's own pace, discovering stick forts, bird calls, and weather changes along the way.
Social studies involve reading books or listening to music from various cultures or playing with neighbors from Cameroon, the Philippines, and Mexico. We try new restaurants to explore foods from Greece, Mexico, Germany, and Italy.
Some days we go to the shopping mall and work on self-advocacy while interacting with shop employees. My daughter is learning money recognition, and she is highly motivated to pay for a chocolate-chip cookie independently. Riding escalators and elevators or noticing the ever-changing surfaces of carpet, tile, concrete, ramps, and stairs offers ample chances for her to explore with her long white cane.
Learning Braille looks different, too. Instead of a set time to work on Braille with a teacher of blind students, we have the flexibility to find literacy opportunities in our daily lives. For example, this morning, while my daughter ate breakfast, I sat next to her and practiced my alphabet on the Braille Buzz.
Some days I listen to the creative stories my daughter tells me while she runs her fingers across a page of Braille. While she is learning the building blocks of literacy, she puts together the elements involved in reading, writing, storytelling, grammar, and more.
Last Thursday we went to Costco. While waiting to make a return, we discovered an ATM that had Braille instructions next to the keypad. My daughter was fascinated to learn that the machine had money inside.
I often have to remind myself that my daughter has only had six years on this planet. There is so much that she has yet to discover. So it is good to go slowly, to savor the moment and let her learn through life's everyday events.
It is a privilege to work from home and have the family support to walk with us during this season. It is an honor to have the opportunity to learn alongside my daughter and to watch as the world unfolds before her. It is a blessing to have friends and colleagues who are willing to join the journey with us, offering tools, guidance, and resources as we learn to navigate this new path. The pandemic led us to make a choice that has brought us untold joy.
by Charles Pat McKenna
Reprinted from The Sounding Board, the Newsletter of the NFB of New Jersey, Spring 2020
From the Editor: On November 5, 2019, the blind community lost a gifted and dedicated teacher, Barbara Shalit. As one parent wrote, "Barbara was a Braille teacher extraordinaire. She made sure her students learned not only the Braille code, but also how to type, how to read charts and graphs, and how to examine illustrations in order to gain full tactile literacy." A few months before her passing Barbara found time to write an article for Future Reflections, "Tactile Fluency: Expanding the Concept." In the article below Charles Pat McKenna, one of Barbara Shalit's former students, pays tribute to the teacher who shaped his life. Pat McKenna is an attorney who lives in central New Jersey.
I was four years old, happy and inquisitive. I was four, playing in the woods near my home, the sun bright, the sky clear.
Then something happened. Something bad. I was sick. There was a hospital room, and machines, very serious doctors, and very sad relatives. I never thought I'd be able to go home again. A view, I learned years later, that was unanimously shared.
But I did go home. I was weak and compromised, thin and fragile, but finally I was able to go home. I was happy to be better, but I was not unscathed. Something had changed. The sun wasn't so bright. The sky wasn't so clear. I was blind.
What does a blind kid do?
I was five, and blind. Kindergarten was to start in the fall.
We lived in a wooded part of New Jersey—me, my single mom, and my kid brother. We were unsure what would come next, uncertain whether I would even be able to go to school.
What does a blind kid do?
"Pat," my mom calls. "She's here."
I join my mom at the front door. Outside I hear the sound of a gentle, late-summer rain. Our guest is tall and polite. She has a soft, pleasant voice and seems very kind. She sounds smart, and wise, and elegant, and reassuring.
"My name is Ms. Shalit," she says. "I'm going to be your Braille teacher."
She was part of something called the New Jersey Commission for the Blind and Visually Impaired, and she would teach me Braille, as well as the other essential skills I would need to succeed, skills that would build my independence, my confidence. We would work together at home and at school. She told me, "Yes, of course you'll be going to kindergarten."
I sit at my mom's dining-room table, and we talk. Ms. Shalit works with other kids who can't see, too, and she likes to travel, and she has a big dog named Clyde.
"Here," she says. I recognize the sound of paper. "Feel this." A sheet of thick paper is on the cool, smooth surface before me. "It's the Braille alphabet."
A gentle touch guides my left hand to the paper's top left corner. "Start here and move right."
I do, encountering small clusters of bumps. I feel and explore each grouping.
"How did you make these bumps?" I ask.
"Dots," she corrects. "And I'll show you. There are two ways we can make Braille letters."
Fascinated and utterly absorbed, I run my fingers over the dots again and again. Ms. Shalit quietly steps back and has a conversation with my mom that I'm not supposed to overhear, but I interrupt, because I'm curious, and I'm five.
"Is this letter a T?" I ask, indicating a grouping of three dots, two side by side over a third.
"No," she says. "That's an M. Here, this one is a T."
My hand is gently guided to a different character. She shows me Braille numbers 1 through 10. Mom makes tea for her, and we talk long into the afternoon. "Well," she says finally, "we should probably wrap up for today. I'll be seeing you again in a week. Do you have any last questions for me?"
I do, the first of what would be so, so many questions. Ms. Shalit didn't just teach me Braille. She taught me how to be independent, how to be confident.
Over the months and years that followed, we would sit together at home, or in an unused room in my elementary school, and cover a multitude of different subjects. We would practice writing and reading Braille and work on orientation and mobility. We discussed the planets in the solar system and the impact of the last ice age. We studied basic arithmetic using paper clips as props, and we talked about France, and why leaves change their color. I learned to use a Perkins Braillewriter and a slate and stylus, and how to figure out the answers to questions such as, "How do I know when a word starts with a silent K?"
Ms. Shalit showed me how to order books from Recording for the Blind (RFB, which has since been renamed Learning Ally). We read about the giant Pacific octopus, the function of chloroplasts, and the contributions of founding fathers such as John Hancock. She taught me to use a manual typewriter and a talking calculator, and she helped me understand the difference between an atom and a molecule.
Sometimes we met in an empty classroom, smelling of chalk dust, art supplies, and sneakers. At other times we met at my house, sitting for long and fascinating hours at my mom's dining-room table, Clyde waiting patiently in her car. Once she came to the house for a lesson with her leg in a complicated cast, the result of a bad skiing accident.
And the lessons continued. Through hot summer days, winter snowstorms, and even a power outage, we would meet to review Grade 2 Braille and the Nemeth Code and to practice the multiplication tables. Wooden models, raised-line drawings, and a tactile globe made it possible for me to learn about the geography of each of the fifty states and the locations of the Tropics of Cancer and Capricorn, and to discern, "How big is the Amazon?" Using sets of 3D models we studied geometric shapes such as the rhombus, the cone, and the octahedron, which was my favorite. And I always had more questions.
"Why do the days grow shorter in the fall and longer in the spring?" "Do all birds migrate?" "For a word like (other): Do I write that in Braille using the THE contraction followed by r, or by using the TH contraction followed by the ER contraction?"
Ms. Shalit was my teacher of the blind and visually impaired (TVI) through the end of fourth grade. She was a guide, a mentor, and a light that came at a time in my life when one was needed most. She was the definitive force, teaching me the skills I needed to be independent, to be confident.
That first visit is still fresh in my mind. It's a good visit, but my unaccustomed fingers are numb from running over the same Braille characters so many times. A few dots are a little flatter than they were before. Outside, it's clearing, the rain has moved on. She finishes her tea, returns the cup to the kitchen counter, and collects her things.
She stands in the open front doorway. Outside the air smells clean.
"I'll be seeing you again in a week. Any last questions for me before I go?"
"Yes," I say. "What can a blind kid do?"
"Anything," she says. "Anything."
by Gloria Rodriguez
From the Editor: When Gloria Rodriguez won an NFB National Scholarship in 2017, she planned to enter the field of disaster management and recovery. In this article she explains how she arrived at this career choice and where it led her during the COVID-19 crisis.
I am the oldest child in a first-generation Spanish-speaking family. As a child I faced the dual challenges of having a visual impairment and learning English as a second language. I remember the day when my kindergarten teacher had us bring in a picture of something that started with the first letter of our names. G. That sounded easy enough; I could have brought grapes, or something green. Instead I brought in a picture of a cat. It wasn't a cat to me, it was a gato.
I remember being asked by my classmates why I looked so closely at my books. I had no idea what they were talking about. I remember being pulled out of class for Braille instruction and for courses for multilingual students. Those experiences were instrumental in shaping me as the resilient, curious, and committed person I am today.
The Animal Planet channel and science programs on television spurred my ongoing love for science, a deep interest that I wished to cultivate. Over time this interest evolved into a desire to work in the field of natural disaster relief and preparedness systems. Sometime after Hurricane Katrina struck, Animal Planet aired a program called "The Little Zoo that Could." The program featured zoo director Patti Hall and her staff as they evacuated all of their animals to higher ground in response to three hurricanes: Ivan, Dennis, and Katrina. Ivan hit in 2004, while the other two occurred in 2005, which was a record-breaking hurricane season.
I watched this program at a time when Steve Irwin was my hero. Irwin was a naturalist and TV personality known as "The Crocodile Hunter." I was convinced I wanted to be a conservationist or a zookeeper and have a program on Animal Planet. I watched every "Crocodile Hunter" episode, sitting on a coffee table placed four feet from the television. The TV was one of those massive, blocky sets that was at least 1.5 by 1.5 feet and weighed more than fifty pounds.
I remember a scene on Animal Planet in which tigers were loaded into eighteen-wheelers to ride out the hurricane, and zookeepers used garden hoses to give them water. With each hurricane the power went out, and they still had to feed and care for the animals. In another scene the zoo staff drove back to assess the damage and found that the road was cut off because everything beyond was underwater. At one point the staff rebuilt the zoo, only to have their efforts destroyed by another hurricane.
Needless to say, all the stories about destruction were terrifying to me. I had never been to the east coast, let alone seen in-depth videos and imagery of these natural disasters. I was awed by the devastation and by the staff's love of their animals. The destruction brought about by the hurricanes and the staff's commitment to rebuild roused intense emotions in me.
Shortly afterward, Animal Planet aired a special program about the ways elephants responded to the 2004 Indian Ocean Tsunami. The special focused on the scientific understanding of how animals sense disasters before they occur. I watched people forced to run inland or to the tops of buildings, hoping for survival as the water rose.
One day at a book fair at school I picked up a book about extreme weather. It described many kinds of disasters: blizzards, tornadoes, and more. I have that book to this day, along with a book about the most extreme animals and one about the most dangerous animals.
My interest in disasters influenced my education and shaped my career goals. In college I studied natural sciences and organization systems to prepare for a career in emergency management. I attended an interdisciplinary program at the Evergreen State College in the state of Washington, which broadened the range of my studies. Emergency management professionals need to understand a bit about everything and wear many different hats. For example, they need to understand how existing data and new trends influence the workplace, how climate change is intensifying disasters, and how medical responders serve people. I am grateful that my undergraduate studies facilitated the learning I needed to become a jack of all trades.
I completed my Master of Public Administration at Evergreen and graduated in June 2021. I greatly appreciate the core values conveyed in my master’s program. They guided my learning as a student with multiple identities that influence what I want to achieve. These values include embracing diversity, equity, and fairness; advocating powerfully; and imagining new possibilities in order to accomplish positive change. My end goal is to be on the ground coordinating the clean-up and recovery efforts after earthquakes, tsunamis, or other disasters.
The pandemic came with many forms of devastation. It brought challenges we had not experienced before and forced the world to adapt to new methods of education, work, and health care. Throughout 2020 each month brought new crises in addition to the pandemic itself.
As I see organizations making positions available remotely and meeting over Zoom, I feel hopeful that jobs will become more accessible for people who don't drive. Many companies are beginning to see the need to raise wages in order to compete in the new economy. Hardship and devastation can bring growth, renewal, and beauty. This phenomenon never ceases to amaze me. It's not always apparent, and it may take many years to see the positive change, but time and time again communities rise above their challenges. Seeing this resilience is one of the many things that makes this kind of work very attractive to me.
As it turned out, the pandemic allowed me to start my career and get firsthand experience helping my community through a major crisis. My first position was with the Pierce County Department of Emergency Management in the state of Washington. I started by working in mobile COVID testing, and then I began presenting movies to vaccine clinics. I served as the support team leader for the Access and Functional Needs (AFN) team. The AFN team is designed to address barriers to access that patients would experience without adequate resources or accommodations. We hosted three to seven clinics a week and saw thousands of patients all over Pierce County. My mom or my brother drove me and picked me up each day, and Silo, my guide dog, always came along. I served under the county's access and functional needs coordinator.
I contributed in many ways to the ongoing development of the AFN program. My work included training staff to lead simultaneous operations, forming community partnerships to promote vaccination, and leading AFN staff and interpreters. This is the team that makes or breaks the experience of the whole vaccine clinic for many people. I customized processes for specific events or for patients coming through the clinic.
Every day was different, and there were always new challenges. One day we might have two hundred or more Latinx community members who needed Spanish interpretation, and I would have to coordinate multiple certified interpreters. Another day I would need to greet a patient who is deaf, using a radio communication system until our ASL interpreter arrived. I would welcome the patient and explain that I'm blind and need slower signing. Sometimes we would have a local doctor lead a caravan of five vehicles, all loaded with patients who had limited English proficiency. The doctor would support them all on site.
I was also responsible for handling issues regarding staff, the general public, and changing policies. In the beginning our medical staff wanted to pull aside vehicles with patients who fell under the AFN umbrella and were going to take more time checking in. The patients would be allowed to rejoin the line when they were ready. I was not afraid to say we weren't going to do that. Even if some people needed more time and held up the line, pulling them out of the line would be discriminatory, exclusionary, and isolating. Our goal was to make sure every patient was taken care of on their terms and at their pace. I'm proud to say I made that change, and it didn't take long before it was implemented.
Another thing I'm proud of is being featured in one of the videos produced to encourage vaccination among the BIPOC community. I participated in other activities for the campaign, but this one is my favorite because I proudly introduce the viewer to my guide dog, Silo. Here is the link to the video posted on YouTube. It also ran on public television.
https://www.youtube.com/watch?v=anSCjTUx4OM&ab_channel=PierceCountyPierceCounty
At the vaccine clinics I sometimes joked, "The pandemic isn't an earthquake or a volcanic eruption, but I'll take it." I'm proud of the work I have done. Together we vaccinated more than eighty thousand people.
At the beginning of June I started a new position as vaccine coordinator for Latinx Unidos of the South Sound. In this new role my goal is to increase vaccine participation in the Latinx community. I am excited to work more closely with the community I was raised in. I want to form relationships with local businesses and schools, and I hope to continue to contribute and learn through these efforts. My cultural background and upbringing will play a significant role in how I approach this job. I look forward to trying new outreach methods and being creative. I am so excited about these new challenges!
I never expected that a pandemic would launch my desired career and give me the chance to create systemic change in an organization. It is a privilege to gain work experience with so much complexity so early on in my career. Some people who graduated at the same time I did are still not in this position. Some people spend their whole lives discerning what they are meant to do. Having the opportunity to start doing the work I have aspired to do for so long is not something I take lightly. I hope to take advantage of everything I get to do and learn.
I am certainly one of those people who run toward danger instead of away from it. I bring a perspective and a voice that historically have not been included in disaster response. I hope that in their own time everyone will figure out what they want to do and live their lives the way they want.
I strongly believe that learning to identify your needs or the needs of others and communicating or pushing for those needs is invaluable. Like figuring out what we want to do in life, these skills take time, but they are essential.
by Sara Luna
From the Editor: Sara Luna was awarded an NFB National Scholarship in 2020. In 2021 she graduated from North Park College in Chicago with a double major in history and communications. She co-chairs the Diversity and Inclusion Committee of the National Association of Blind Students (NABS) and serves as first vice president of the Illinois Association of Blind Students (IABS).
I can't recall when my desire to go skydiving began. The idea of willingly jumping out of an airplane thousands of feet in the air and safely gliding down to Earth has always captured my imagination. At the age of ten I promised myself that I would go skydiving for my twenty-fifth birthday. Many years later I fulfilled that promise. I went skydiving shortly before my twenty-fourth birthday in June of 2021. My friend, who is also named Sarah (but with an h), was assembling a group to go skydiving on her birthday in June. I instantly knew I had to take part. It was the perfect opportunity to see old friends and fulfill a lifelong dream.
Once I made the commitment my excitement mounted as the day drew nearer. Then, on the night before the jump, my nervousness settled in. I began to dwell upon the inherent risks and dangers involved in this sport. While I literally lost some sleep due to these considerations, I still looked forward to my jump.
My group assembled at the Chicagoland Skydiving Center (CSC) early on the afternoon of Thursday, June 10. Our excitement was infectious. Of the six people jumping, five of us were legally blind. Every staff member at CSC was welcoming, considerate, and professional. They were all understanding and accommodating, and they did not make a fuss about the fact that the majority of our group members were blind.
Once we all checked in, we watched a video on the dangers of skydiving and the serious nature of our commitment. At this point some anxiety began to mingle with my anticipation.
As our group was too large to go up in one airplane, we were split into two groups of three. I was scheduled to jump in the second group, so I had quite some time to dwell on my decision to jump. As my group waited we got to see our friends in the first group take off in the airplane. At this point it dawned on me that I had never considered how incredibly loud the airplane was going to be. Thus I learned that I would have that wonderful noise to look forward to on my ascent.
Once our friends made their safe landings, it was my group's turn to meet our instructors and prepare for the jump. My instructor, Sparky, helped me put on my harness. The harness consisted of two large straps on my shoulders that ran down the front and back of my torso, two straps around my thighs, and a few other major straps around my hips and torso. After tightening most of the straps, Sparky talked me through each step of what was about to happen. He told me about boarding the airplane and making the ascent, and he explained what I had to do before and after we jumped out of the plane.
Once we finished the briefing it was time to go out and wait for our plane to arrive. Everyone in our group was joking and excited about what was to come. Sparky told me that his friend would be doing a solo jump right before us. He asked if I would be interested in engaging with his friend during our free fall. Out of curiosity I agreed.
When the plane arrived I was once again enveloped in the noise of the engines. We climbed the steps into the plane in pairs. As the ceiling was very low, we had to crouch to make our way to one of the benches that ran along either side of the plane. We buckled our seatbelts and were ready to take off.
Ever since I took my first flight at the age of sixteen, I have loved the feeling of flying on a plane. The immense acceleration, the feeling of taking off, and the knowledge that we are no longer tethered to the ground have always filled me with joy and wonder. On this day my joy at takeoff was amplified by my excitement. Due to the small size of the plane, the speed and angle of the takeoff felt much more dramatic than the sensation of taking off in a commercial jet. My anticipation mounted as we gained altitude. The joy in the plane was infectious as everyone shared laughs, high fives, and fist bumps.
Due to the noise from the engines, I expected to have some difficulty hearing my companions speak during the flight. Fortunately the engine noise was not completely overbearing, and I was able to hear my fellow passengers throughout the flight. Periodically I looked out the windows at the clear blue sky and white fluffy clouds. My perspective of the clouds changed throughout the flight. At first they were far above us. Eventually we were among them, all at the same height.
A few minutes into the flight I began the process of getting connected to my instructor, Sparky. The process involved sitting sideways along the bench so we were facing the back of the plane. Sparky had to link together sets of clips that were near our hips and two other sets that were on our shoulders. Once this was done he tightened all the straps on my harness one final time. As I put on my goggles, I asked myself how I had never once considered that the wind would be really cold thousands of feet in the air. On the ground it was 90 degrees F, but the warmth in the air dissipated as the plane climbed higher and higher.
Eventually we reached our desired altitude of 14,000 feet. It was time for people to start jumping. A few individuals were jumping by themselves, and they went before me. It was extraordinary and terrifying to see and hear the wind carry them away. One moment they were in front of the door, and the next moment they were simply gone.
Then it was my turn. Sparky and I slid down the bench together so we could squat in front of the wide open door. The moments right before we jumped were intense and terrifying. The sound of the wind rushing by, combined with the cacophony of the engines, was incredibly loud. I felt the cold wind rushing by as I looked out the door, and I saw the clear sky and white clouds that made up this cold, loud void. I thought to myself, I'm going to be out there in a matter of moments!
Sparky said, "Safety Position." This was my cue to place my hands on the two large straps that ran over my shoulders, along the front and back of my torso. Then Sparky said, "Ready! Set!" I never heard him say "Go!" because that's when we jumped. Our sixty-second free fall began.
Depending on the situation, sixty seconds can feel like an eternity or like the blink of an eye. This was by far the most terrifying and exhilarating sixty seconds of my entire life. As we jumped we were embraced by two powerful forces, the roaring wind and the pull of gravity. Briefly I saw the white airplane, and I caught a glimpse of the distant browns and greens of the ground. I distinctly remember thinking, This is actually happening! Enjoy it!
For a few moments I was so disoriented that I could not identify which way was up and which way was down. The overwhelming plummeting sensation quickly reminded me which way I was headed.
Everything about the free fall was intense—the cold of the air, the sound of the rushing wind, the almost smothering pressure of the wind stealing my breath, the plummeting sensation, the speed of our descent, the vivid white clouds and clear blue sky. Due to the strong winds, I found it difficult to breathe. I kept reminding myself to keep breathing.
During our free fall Sparky's friend, the solo jumper who left the plane right before us, appeared directly in front of us. I was completely baffled as to how he managed the perfect maneuver that brought him directly in front of us. As we had planned, he reached out and took my hands. Having him as a reference point helped me orient myself and remember to breathe. Eventually he let go, and Sparky and I continued our descent together.
During the free fall I never once considered the danger. I simply focused on taking in all the sensory information I could absorb. I enjoyed every second!
At the end of our sixty seconds, Sparky deployed the parachute, slowing our momentum. I expected this to be a physically jarring event. Fortunately, I was wrong. It was very comforting to know that the parachute was there, supporting us. I felt safe and secure, just as I did within the tight straps of the harness. I took a much-needed deep breath, and my ears popped for the third time in about seventy seconds. The abrupt absence of jet engine noise and rushing winds added to this almost tranquil portion of the descent.
At this point I looked around and noticed that the white, fluffy clouds were definitely above us. We were clearly amongst them mere moments ago. The greens and browns of the ground stretched out beneath us. It was a captivating sight. The knowledge that we were suspended hundreds of feet in the air, without the need for floors, sidewalks, or jet engines, was incredibly freeing!
As we slowly descended Sparky steered the parachute to execute spirals in the air. He asked me if I would like to steer, but I elected simply to enjoy the ride. It was wonderful to spin like that, hundreds of feet in the air. It was more exhilarating than any roller-coaster or carnival ride I have ever taken. As we spun, the horizon between the ground and the sky was visible to me at a severe angle. The spinning made me a bit dizzy, but it was still incredibly fun.
As we got closer to the ground, the air temperature changed. The air got warmer as I began to feel the sunshine more and more. When we were almost to the ground, Sparky gave me instructions for the landing. He told me to bring my legs up so they were straight out in front of me. Our landing was very gentle. We glided smoothly to the ground in a sitting position. Once Sparky disconnected our harnesses, he gathered the parachute, and we returned to the facility.
As I came down from the adrenaline rush, I began to reflect on what had just happened. Sparky and I just jumped out of an airplane at an altitude of 14,000 feet! The sixty-second free fall was intense, terrifying, and exhilarating. Once the parachute opened, gliding down to the earth was great fun, with stunning views. I literally fulfilled a lifelong dream, and it was absolutely worth the wait.
I looked up at the sky, feeling the sun on my face, and thought to myself, I was just up there, that it was the thrill of a lifetime! I would absolutely do it again.
by Elizabeth Rouse
From the Editor: Elizabeth Rouse graduated from Central College in Pella, Iowa, where she earned degrees in English and theatre. She serves as president of the Iowa Association of Blind Students and as treasurer of the National Association of Blind Students. She plans to enter law school after she completes her training at the Louisiana Center for the Blind.
"Go up to the board and draw an image from last night's reading assignment."
The professor's instruction seemed simple enough, but I felt my palms start to sweat as I rose from my chair. As the only freshman in an upper-level theatre history course, I wasn't yet confident in my understanding of the material, let alone my artistic abilities to recreate it in front of my peers. Nevertheless, I walked to the board, picked up a piece of chalk, and began drawing an image from my favorite scene of the Greek myths I'd barely finished reading. I paid little attention to my peers as they completed the same task. I figured I wouldn't be able to see their drawings, anyway. When I finished, I returned to my seat to wait. But my professor stopped me in my tracks.
"Now, I'd like all of you to gather around one another's work and describe, in detail, the images you drew so that we all understand how you saw the scenes unfolding."
The professor didn't target me or call me out for being blind. She simply took an assignment and incorporated visual descriptions into her curriculum. With one simple statement, she changed the trajectory of my college career. From that day on, theatre became a part of me.
During my four years of study at Central College, I played many roles (pun intended) in the theatre department. I was tasked with stage managing, lighting and sound design, and even directing. One of the most memorable adventures for me was stepping onto the stage as an actor. I was fortunate enough to be cast in four main-stage productions, the first of which took place during my sophomore year and the latter three during my senior year. Through trial and error, I learned valuable lessons about how to access my scripts in Braille, how to navigate the stage with and without my cane, and how to make my interactions and gestures authentic when I performed. Many of the lessons I learned took time and effort, and all of the discoveries grew out of trial and error. Confronting the challenges wasn't fun at the time, but I can reflect upon my experiences and take pride in all that I accomplished.
The first show in which I acted provides many great examples of the challenges I had to overcome, beginning with the audition process. When the director announced the upcoming show, ANON(ymous) by Naomi Iizuka, I immediately felt the desire to participate. I had read the play in my first theatre course during the previous academic year, and I fell in love with the script. So when the auditions were announced, I took action.
I met with the professor in her office and asked about the audition process. She was thrilled at my interest and gave me a script. She suggested that I have the Student Support Services office on campus transcribe the material into Braille. When I asked which scenes she wanted me to read from, she slyly told me to have the script transcribed in its entirety. I think she knew from the get-go that I'd be participating in that show one way or another.
After the first cast read-through of the script, my next challenge came into focus—navigating the rehearsal/performance space and set. My director told me that I could portray my character as blind, which would allow me to use a cane of sorts. However, I doubted that her original image of the show included a blind character. I decided to rise to the challenge of stepping into a sighted role. Over the next few weeks I became familiar with the stage, working closely with the show's technical director. Any time an element was added, taken away, or modified, he called me into his office and explained the alteration. Then we would explore the set nonvisually together. Every shift was an adjustment, but in addition to the interactions I shared with my director and technical director, I also built relationships with my fellow cast and crew members. Nearly everyone was receptive to my requests and questions, and together we became a cohesive unit. Throughout the rehearsal process I worked with everyone individually, incorporating unique blocking into our scenes that looked natural and authentic to the audience and served as a covert means of guiding me from one side of the stage to another when necessary.
My experience did include some difficult conversations though. I recall asking my director rather bluntly if she intentionally was keeping me on one side of the set because she was afraid that I would hurt myself en route to a different location. Fortunately, she and I maintained a relationship rooted in honesty, and we were able to navigate her hesitation together. I ended up using my feet and the guidance of others to act on many parts of our set, which consisted of an elevated, circular rim with a lower portion in the middle. Not all of my attempts were successful; in fact, I almost slipped during a performance. One of my fellow cast members was paying close attention and found a way to assist me without breaking character. Our creative minds were put to the test on so many occasions, but no one ever made me feel that I was a burden or an inconvenience. Instead, the relationships I developed during that show allowed me to succeed in a realm that most people would not expect.
One of the more difficult challenges I faced involved the use of gestures and facial expressions. In the theatre body language is essential to convey character, emotion, and expression. The play I first participated in, per my director's wishes, used classic gestures such as motioning to the sky whenever a reference to the gods appeared in the script. At first I struggled to portray emotions without prompting, since I do not experience facial expressions and gestures in my everyday life. Interestingly, the level of expressiveness that my director wanted was not the norm for my fellow cast members either, so we spent many rehearsals exploring expressions and movements in front of our director. Often she would identify something she liked and wanted to keep, and we had to learn to recreate whatever we had done. Because we were all learning from one another, I was not the only one asking questions such as, "What did I do with my face?" or "Can I feel the motion you're making with your arms?" Did I sometimes ask follow-up questions, requesting more specifics or feedback on my imitations and interpretations? Of course I did, but those questions never made me feel uncomfortable or embarrassed. At the end of the day, my learning and success made our show a more cohesive and enjoyable performance. Theatre is all about learning to act out, act odd, and act on.
While each lesson took time to learn, I'd like to share the most valuable takeaways that affect the actor and the spectator alike.
First, don't be afraid to get your hands dirty! My first step when I familiarized myself with the set for any performance was to go in and explore. I'd contact my school's technical director and find a time when we could venture onto the set so I could learn where steps, doors, and scenery were located. After we finished our walk-through, the technical director answered any questions I still had. When things were added or modified in any way, we'd go through the process again. Communication was the key to obtaining information. The same rule can apply for backstage participants and spectators; you'll never know what sensory options are available to you until you ask.
Next, learn to laugh at yourself! Theatre is filled with not-so-comfortable conversations. I can't count the number of times I had to ask if my facial expression was appropriate for a given scene or admit that I needed an extra hand getting off the stage when the lights went out. The more comfortable you are with the situation, the more easily you can convey your needs to those around you.
Don't be afraid to devote yourself wholeheartedly to the experience! As a member of the audience, I find myself laughing uproariously and bawling into my hands without a care in the world of what those around me are thinking about me. Theatre impacts each of us uniquely. If a friend and I see a show together, I may find it hilarious while my friend finds the plot depressingly sad. It's okay to have your own thoughts and opinions about what you interpret from a particular script or performance. The people onstage live for audience reactions, and you may just be the one person in the audience who picks up on a subtle joke or pop culture reference they've been dying to convey.
Finally, understand that theatre is a means of give and take! Actors don't parade around a stage for their own benefit. They love the art so much that they practice day in and day out to put on a performance that means something to them. If you're passionate about theatre, find a way to become involved. Audition for your dream role. Take tickets at your local performance space. Write a play. Make theatre mean something to you in whatever way you know how.
Simon McBurney once said, "Theatre is the art form of the present: it exists only in the present, and then it's gone." I invite you to meet me onstage and not let this beautiful art pass you by.
by Precious Perez
From the Editor: In 2016, as a rising freshman at Berklee College of Music in Boston, Precious Perez produced her debut album, "Hummingbird." Her second album, "Agua de Valencia," followed in 2019. She graduated from Berklee in 2021 with a double major in music education and vocal performance. In 2020 the National Federation of the Blind awarded Precious Perez the Kenneth Jernigan Scholarship for $12,000. This article appeared on the NFB blog on May 10, 2021.
December 6, 2018, was the first time I played a gig that I organized myself. I'd spent weeks facilitating rehearsals with my incredible musician friends, continuously following up with the elusive owner of the venue I was trying to book, and promoting the show that was to take place on that wintry Thursday night the week before finals. A little over a year prior, I'd put together a band on short notice and played my first gig in Valencia, Spain. It was on that stage abroad that I realized that I could be a blind frontwoman and band leader.
I've always been sensitive, and I have struggled with anxiety, even before I was diagnosed and knew what to call it. Anxiety comes with the territory of performing, but it's a whole different animal when you live with it offstage as well.
I woke up on December 6 with my heart pounding and my mind racing. What was I going to wear? Would people even show up? Did I get all of the equipment we needed in order? What if something went wrong? Would the person at the venue take me seriously as a blind woman? I tried to breathe as I carried out my busy day, running from class to class around the bustling Berklee campus with my fiancé/percussionist, who was keeping me grounded.
I knew deep down that everything would work out, but I couldn't help but wonder if I chose the right shoes, if I was wearing the right outfit. I'd chosen a dress with decorative chain strands hanging from the bottom, over stockings. The chains got caught in the stockings, and they ripped, so I found myself running to TJ Maxx to buy more, which also ripped in the process of me trying to put them on. I had to go back to the store to find a pair of leggings, because I'd left mine at home. I had to video call my mom to verify that it would be acceptable for me to wear my comfortable flats. This was all quite stressful, but it ended up okay.
An hour before the show, as the band and I got ready to catch our ride to the venue, the biggest hiccup occurred. I was practicing the acoustic set with my fiancé, Shane, when his bongos fell from his lap. One of the heads completely broke and was no longer playable. I fought through my panic as we tried to ask around, the band members calling their friends. My door person, Cristy, and my keyboardist, Ellis, stayed back with Shane to see if they could borrow a set of bongos from the ensemble department at school. My guitarist, Sam; my bassist, Sophie; my drummer, Josh; and I made it to the venue right around when the show was supposed to start, while those who had stayed back made their way to join us. Shane called, letting me know that he could try to play with one bongo. I said that's what I needed him to do, because we were all going to be on that stage together.
We had a late start, and my anxiety nearly sent me into a tailspin, but everyone had a blast, and I've learned a few valuable lessons since then. My family and a few friends were there, and I've got the videos to prove it.
Being a performer is no cakewalk, never mind being a blind woman who is leading a band while dealing with venue owners who may or may not be easy to work with. There have been times when I didn't have print music charts for new band members; I had to learn the hard way to be prepared for everything. I've had to learn to ask for help because I couldn't use the sound systems that weren't like the ones I was used to, or because I didn't know how best to give a visual cue to my musicians when rehearsing for a gig or performance for school.
I did my senior recital online during the COVID pandemic. It was supposed to be in front of a live audience with my band onstage with me. Instead, it was me, set up in my kitchen at home with my sister behind the camera and my family in the other room, watching the Facebook live stream as I sang over backing tracks and put on a show by myself. Virtual performances have their own stressors for me as a blind performer. For example, you might not know how much of the background a phone camera will capture, no matter how many tips and tricks you have up your sleeve when setting it up. I have to send videos off to trusted friends and family before I post them, to make sure they look good. I've had to ask if I can be seen through my webcam performing live on Zoom. I have my pre-recorded videos screened after doing my best with my little tripod, Voiceover guidance, and my phone. I've figured out that my computer's webcam is perfectly centered when I move the screen back, and I don't have to worry about the background, so I've taken to recording my videos via Zoom and optimizing my audio settings to avoid having to get them checked or capturing my messy bed in the background.
It's not easy being a blind performer, whether you're pre-recording in front of a camera or booking gigs for a live audience, but you learn what works and how to navigate all of it. For me, it is so rewarding to put myself out there. I follow my big dreams, and I show the world that blind people are capable in the process of living the lives we want.
If you take away anything from all this, it's that you're not alone in any struggle you face. Asking for help isn't weakness, it’s strength, and the experience isn't as rewarding without people to share it with you. There's a network of blind performers who have been where you are, and you are always welcome to join the NFB Performing Arts Division. If I can do it, you can do it, too. Believe in yourself, because I already believe in you.
by L. Penny Rosenblum
From the Editor: Early in March 2020, a team of researchers led by L. Penny Rosenblum at the American Foundation for the Blind (AFB) began to conduct research on the effects of the pandemic on the blind and visually impaired community. "Access and Engagement I" and "Access and Engagement II" collected data from family members, teachers of students with visual impairments, and O&M specialists to understand the challenges and successes inherent in the patchwork of education. The findings revealed challenges with digital learning tools, mental health concerns, and the needs of students with additional disabilities. They also pointed out successes that have occurred as the pandemic has impacted education during the 2020-2021 school year.
When the COVID-19 pandemic struck in the spring of 2020, blind and low-vision students across the United States and Canada shifted from in-person education to virtual education—and, in some cases, to no formal education at all. The American Foundation for the Blind brought together a team of researchers to explore the impact of these changes on blind and low-vision students, their families, and their teachers. In April 2020 the research team launched our first survey to gather information that could show us how students, families, and teachers were coping with these dramatic changes.
By the beginning of the 2020-2021 school year, it was clear that the pandemic wasn't going away any time soon. We still had a lot of questions about how blind, low-vision, and deafblind students were receiving an education. We wanted to know whether the quality of virtual education was as high as the quality of the education these students received in person. Did the students have the materials and the support they needed in order to learn? What roles did teachers and family members play in supporting these students?
In an effort to answer these questions, the research team conducted a second survey in November 2020. At the end of the 2020-2021 school year, the researchers conducted focus groups and interviews to gather still more information, knowing that the pandemic continues to have an impact on our children's education.
Over the years many studies have been conducted about the education of blind and visually impaired students, but most of these studies had relatively small sample sizes. Each researcher looked at very specific questions. In contrast, the "Access and Engagement" studies were relatively large; we had 1,921 respondents in the first study and 662 in the second. Because we were interested in overarching issues, we looked at a wide range of variables. Certainly none of us wanted the pandemic! However, since we have been placed in this situation, we have had the opportunity to gather valuable information that can help us advocate for positive change in the future.
As we explored how COVID-19 affected blind, low-vision, and deafblind students, we found some issues that are related directly to the shift to virtual education. For example, our students need a lot of hands-on instruction in Braille, orientation and mobility (O&M), and independent living skills. It can be difficult for teachers to provide such instruction at a distance.
The studies also showed us that our students face some deeply rooted systemic issues in education. Some of these issues have been exacerbated by the pandemic and the shift to virtual learning platforms. The studies confirmed things that parents and teachers already know from personal experience. Now we have data to back up our anecdotal understanding. Parents no longer have to go to their school board and say, "This is our experience with our son, Joey." With data in hand families now can go to their school boards and say, "Look! We have data! Here are the voices of others from throughout the nation. Our district never should purchase any product unless it has been tested for accessibility and usability for screen reader users."
The Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) say that accessible tools need to be provided for education. However, the laws leave a lot of gray areas. Because blind and low-vision students make up a very small minority, school districts generally don't think about their needs when they plan programs or purchase hardware and software. If there are forty thousand students in a district and only twenty of them need nonvisual access, the district is not likely to make such access a priority!
Data can help parents and teachers raise awareness and press for the access our students need. A lot can be accomplished at the grassroots level. Parents can push to have a teacher of the visually impaired join the committee that evaluates products to be purchased by the school district. Parents and students can be very specific about the challenges they face with particular systems, sharing those concerns with the school district and with the manufacturer. Older students can volunteer to field test programs and equipment for usability. Teachers can invite administrators into the classroom so they can see for themselves the problems students encounter.
Both reports contain recommendations for creating an education that is more fully inclusive. The reports emphasize the important difference between accessibility and usability. A product may be accessible because it will read material that is on the screen. However, if the student is required to use ten extra keystrokes before the reading can take place, that product is not really usable. The student's productivity will be seriously limited. They will lose time because they're working to learn all the extra steps they have to take.
Technology was here to stay long before the pandemic, but the pandemic showed us that students need to have a toolbox of technology options from a very early age. We need to recognize that a learning process is involved before technology can be used effectively. When devices came home during the pandemic and no one in the family knew how to use them, children were at a severe disadvantage. They didn't have the supports they were used to having at school. Even when the pandemic is behind us, we need to plan for other kinds of emergency situations, such as wildfires or severe weather, that may interfere with education in brick-and-mortar buildings. Building the student's technology toolbox needs to begin in preschool.
When it comes to technology for our students, we know that one size does not fit all. Data from our studies made this reality clearer than ever. In many districts all of the students were given Chromebooks at the beginning of the pandemic. Chromebooks are inexpensive, and they're readily available. However, they don't work for students who use screen readers, and their screen enlargement is limited. When districts give every student a Chromebook, they put students who need a combination of technologies at a disadvantage.
The lockdown added to the problems. TVIs spent a lot of time trying to get into computer labs that were locked in order to get a large monitor or some other critical piece of equipment for a struggling student. The teachers and parents of Braille readers struggled to make the district understand that the Chromebook wouldn't work, and that the laptop that was locked up at school needed to go home because it had NVDA or JAWS loaded on it.
Armed with the findings from our studies, teachers and parents can go to their districts and say, "Here are the recommendations. We must consider each child's individual needs. We can't expect a child to participate in education without the tools they need."
The same holds true for children who use communication devices. A child who has a communication device at school that allows them to make choices and put sentences together needs to have that device at home. With the help of the device the child can communicate with the family. If they don't have their communication device when they're expected to get online with their class, they literally don't have a voice.
Our studies also showed that parents and teachers need training on the devices the child uses. Parents need to understand how the child's communication device works, or how JAWS can be used to attach a document to an email. Sometimes parents need to understand aspects of technology that are specific to blindness and low vision, and sometimes they simply need to build their general knowledge about technology. Many TVIs themselves need technology training. When it comes to technology, everybody has a different comfort level and a different framework of knowledge.
Our first study was done in the spring of 2020, and our second study was done in November of 2020. The reports and executive summaries from both studies are available to the public. During the summer of 2021 we conducted a survey and focus groups with professionals, teens, and families. Currently we are wrapping up our data collection for a report that we hope to complete by the end of the year. Families are always welcome to share their thoughts and experiences with us at [email protected].
During the pandemic many general education teachers and administrators gained a deeper understanding of the role of the teacher of students with visual impairments. TVIs reported that for many of their students they now have a much better understanding of what is happening in the child's home and what is important to the child's family. Families came to appreciate why it is important for their child to build skills in independent living, recognizing that school isn't only about academics. During the pandemic many children advanced in independent living skills such as cooking and dressing.
Our TVIs and O&M specialists are amazing people. They go above and beyond to reach and connect with their students' families. Throughout the school year they found creative ways to teach their students and support students' families. Most of them work in multiple schools, and some even see students in multiple school districts. The teachers had to work with the rules and policies of different districts and even within different schools in one district. We learned that many TVIs prepared materials such as Braille lessons and tactile graphics at home and delivered them to the students' doors.
The studies suggest that some good things have come out of the pandemic from the children's perspective. Children who experienced bullying at school were very happy to be at home, taking classes online. Some low-vision students were better able to access information on the computer than they could in the classroom because they had more control over lighting and font size. The ability to go back and watch a video over and over again to get information was helpful to some children.
Because they no longer had the constant support of a paraprofessional, some general education teachers learned to make adaptations for their blind and low-vision students. Furthermore, many students became better self-advocates, asking teachers to provide the adaptations they needed.
As students return to brick-and-mortar schools, how can we hold onto the things that worked well during the pandemic? How can we maximize the positives to promote the best education for our students? A new hybrid model of education offers encouraging possibilities.
When they cover rural communities such as the Navajo Nation in Arizona, it is not unusual for an O&M instructor or a TVI to travel two hours each way to see a single student. The ability to deliver services virtually allows professionals to see more students and to see them more frequently. With a new hybrid model professionals might visit a student in person once a month and see them three times a month virtually.
During the pandemic many TVIs and O&M instructors took part in professional development activities with colleagues across the country, accessing these programs virtually. These programs helped professionals build a stronger sense of community.
Students, too, have benefited from online opportunities. In 2020 and 2021 students from all over the US participated in the NFB BELL Academy® In-Home Edition. Other valuable resources include the Homework Hotline and APH’s Virtual Excel Academy. The Texas School for the Blind and Visually Impaired hosts an online coffee hour for professionals to get together. Can NFB and other organizations host learning activities throughout the year? Teachers and students could get together with peers all over the country. Now that we've all become more comfortable in the virtual world, perhaps we can leverage that within the blind community for greater opportunities. We hope that professionals will continue to have the flexibility to avail themselves of online resources.
Our research team very much appreciates our close working relationship with the NFB. The Federation has greatly helped us recruit subjects for the research we conduct.
You can learn more about the Access and Engagement studies by visiting https://www.afb.org/research-and-initiatives/education/covid19-education-research. You can find a town hall discussion about the impact of COVID-19 upon education at https://www.afb.org/research-and-intiatives/afb-town-halls/afb-townhall-03-education-across-lifes.
An Interview with Vicki Fant
Reprinted from Braille Monitor, Volume 64, Number 6, June 2021
From the Editor: LaShawna Fant is a graduate of Mississippi State University, and she teaches blind and low-vision students in Mississippi. When she was a senior in high school, she lost nearly all of her vision within a few months. The change shook her life to its foundation, but it sent ripple effects through her entire family. Recently LaShawna interviewed her mother to explore how she coped with the change in their lives.
LASHAWNA FANT: Hello, Mama! Thanks for giving me the time to interview you. Please let the audience know a little about you.
Vicki Fant: Hello, everyone. At the age of eighteen, I became the mother of LaShawna. She was my firstborn. She was born with 20/20 vision. I took jobs as a cook and also in factories to provide for my daughter. I am blessed to have her as my daughter, along with her two other siblings. Currently I am employed in the nursing field and enjoy working in my yard.
LF: I am blessed to have you as my mom. I became blind my senior year of high school. What was this like for you as a mom?
VF: I felt like I failed as a mom. I should have been able to protect you. I cried and cried and cried. You were the person who helped me with your younger siblings. You were the one who helped your grandfather and great-grandmother. You had your own car. You had a job and loved playing sports. It was hard to see you go from having sight to having no eyesight.
LF: How did you adjust emotionally?
VF: As time passed I got better. When you first lost your vision, I thought I would have to take care of you as long as I could. I prayed so much. It seemed as though I prayed non-stop. As I learned about various technology and things that would help you live independently, I knew you were going to be all right.
LF: Being you saw me go from vision to blindness in a matter of three to four months, how did this affect our family and me?
VF: When it first happened, LaShawna, it seemed as though you were going to be in a very deep depression and self-isolate for a long time. Your brother and sister were extremely shocked and confused, because the vision loss occurred so fast. You had been the link that held our family together, and when you became blind, it was like the rug was swiftly pulled from under us.
LF: In the early years of me becoming blind, what were your goals as a mom?
VF: My goal was first to get myself together emotionally and mentally so I could be strong for you. I wanted to get your confidence up so you could get back in the community. LaShawna, I also made it a goal to help our family put the shattered pieces back together. I knew we could still live a happy life despite your lack of vision. I knew that some way and somehow, you needed to go to college, and I made it a goal to learn what it would take to make this happen.
LF: You have been a super mama through this process, and I appreciate you. What gave you the strength to allow me to attend a training center a couple of months after becoming blind?
VF: One of your ophthalmologists in Memphis, Tennessee, made the referral to attend Addie McBryde Rehabilitation Center for the Blind in Jackson, Mississippi. We went for a visit to the center, and I learned about the different ways they would teach you to regain skills such as writing using Braille, walking with a white cane, cleaning the house, ironing, washing clothes, and so many other things. I believed in my heart this would help you get back involved in society and live a full life.
LF: After attending two training centers the first year of being blind, you probably called me fifty times a day to ensure I was good once I started college and lived in the dorms. What assisted you in settling down and becoming less worried?
VF: I saw your confidence and peace. You were attending classes, meeting new people, and seeing others from our hometown; you were just thriving academically and socially. LaShawna, you helped me settle down a lot. I started seeing you in newspapers, on the local news station in Tupelo, Mississippi, and you were receiving many honors and awards. You tutored in higher-level math and English, and this was not long after starting college. I was amazed! It showed me the power of a determined mind, and it reminded me of the strength you had. I was a happy mama!
LF: You have cheered for me through the different phases of my life, whether it was college, employment, community involvement, or leisure activities. What are you most thankful for through this journey?
VF: I am truly thankful that you stayed strong. You made it. It did not break you. You survived and are still standing today. I have peace in knowing that if I die tomorrow, you will be okay.
LF: What encouragement would you like to give parents of blind children?
VF: Always support your child. Find out what resources are out there. Never lose hope. Stay involved with the National Federation of the Blind, because you will meet good people. Life does not stop because your child is blind. The sun still shines.
by Anonymous
Reprinted from Braille Monitor, Volume 64, Number 4, April 2021
From the Editor: Most of the people who work for child protective services (CPS) across the country are deeply committed to helping vulnerable children. They face heartbreaking situations on a daily basis, and they try hard to make informed decisions. By law CPS workers must investigate every complaint they receive about possible abuse or neglect, no matter how implausible the complaint may be. Unfortunately, they may be ill informed when it comes to disability, carrying the same biases that are common in the general public.
All too often blind parents have been subjected to visits from CPS workers because a neighbor, a relative, or a casual observer questions their ability to care for their children. It is not widely recognized, however, that the parents of children with disabilities, including sighted parents, may also be subject to investigation because the ramifications of the child's disability are poorly understood by outsiders. In this article, the parent of a blind child who has autism shares the pain, terror, and humiliation of an unexpected visit from a CPS worker. Due to the nature of this experience, the parent has asked to remain anonymous. Although she does not share her name for publication, the Braille Monitor and Future Reflections believe that her story is an important one that should be shared with our readers.
"My name is Casey. I'm from child protective services. I'm at your house in response to a concern about your kiddo."
The adrenaline rush is instantaneous. Your mind starts racing. What is this about? Who called them? Why?
You won't get the answers to the last two questions. You will get some information about the nature of the complaint, but the visit or call will be a surprise. They want to catch you off guard so they can see what's really going on.
There is a red-haired lady at the house in her car on the phone. Is she taking a call about someone else? Is she doing a background check on you? Why is she here? Do you have to let her into your house? What if you don't? What will they do next? Is she here to take your child? Why?
She finally gets out of the car. She explains that they got a call expressing concern for your child's welfare. There is concern for his hygiene, his hair, and his teeth. He is blind, and the house is so cluttered he can't safely get around.
Now it dawns on you. The new babysitter called in this morning by text. She said she had a personal issue and couldn't make it today. She called. You say so. The CPS caseworker is smooth about this. "I can't say, but families can usually figure it out."
She had only been with you for two weeks, and yesterday didn't go well. She decided to help your son brush his teeth. You don't know how much toothpaste she used, but after he gagged, the toothpaste stain on his shirt was the size of an adult's hand. Then he threw up his breakfast.
He had cheese and toast. She directed him to the bathroom sink, then tried to wash it down the drain. That didn't go well either. The drain clogged, and one of you had to go out and get some drain cleaner.
The day got better, but not by much. Virtual first grade is not for the faint of heart. Going to school on Microsoft Teams when you are legally blind is . . . pointless. Maybe high school or college students can navigate the platform. Maybe the school can provide the materials in large print or Braille. But they don't. You've been pushing for a more appropriate educational approach to pandemic schooling for your legally blind child since September.
Actually, now you wonder. Was it the school? You are on the verge of filing state or federal civil rights complaints for violations of the special education law guaranteeing all children a free and appropriate public education. You've been trying desperately to avoid having to file a formal legal complaint, because you know that such complaints often take years to resolve. If the complaint is that your first grader is not learning to read, justice delayed is justice denied.
The red-haired lady is in your living room. She's got lots of questions. Invasive questions. Who lives here? Where do you eat dinner? Where do you sleep?
You let your seven-year-old give the house tour. He can get around the house fine. He shows her.
There are books and papers around. You've been doing virtual school and work from home for nearly a year. But there is a difference between cluttered and unhygienic, between stacks of schoolbooks and papers and a fire hazard.
You explain about the hair and teeth, though you feel exposed—not naked, more like skinned alive. Every nerve in your body feels like it might explode. She wouldn't take him over this, would she? Why did she call?
He has autism, you explain. Yes, he hates having baths, having his hair brushed, his teeth brushed, his fingernails clipped. All of it. These are textbook symptoms. You have worked with his doctors and his therapists for years on this. You do the best you can.
He gets therapy every day: applied behavioral analysis (ABA), occupational therapy (OT), speech therapy, physical therapy, music therapy, and social skills classes. Surely you explained all this to the new babysitter. Even if you didn't, some of the therapies are on Zoom. She was there. Did she not wonder why he was doing them?
Why did she do this? You have a theory about this. She was frustrated. She had been a nanny for years, and your kid didn't respond to her usual bag of tricks. You had warned her about that. He has autism. You offered to have his therapists give her some strategies, but she declined.
Most days he will cooperate, but virtual school is tough when you are seven—two to six hours a day of Zoom or Teams meetings—actually it seems inhumane. Many workplaces have rules against this for adults.
The cleaning lady has another theory: The job was more work than she expected. "I think she just thought her job was to make sure the house doesn't burn down." She wanted to quit but wanted the referral agency to give her another assignment, something easier. She had been bringing her homework with her and hadn't had a chance to get anything done.
Once the CPS lady is in your house, she wants to see everything: the kitchen, the stove, the fridge, the bathroom. She is monitoring your housekeeping. She wants to know when bedtime is. How do you get him to sleep? What does the morning routine look like? Is he attending virtual school regularly?
Your skin is crawling. But you know that the fastest way to get her out of your life is to answer her questions. You don't want your kid to see that you're scared or angry or confused. Actually, you hope he can't figure out why she's here at all. Unless this goes horribly wrong, you are never going to tell him that she was here to decide whether to take him away.
by Cathy Camper
Reviewed by Deborah Kent Stein
TEN WAYS TO HEAR SNOW
by Cathy Camper
Illustrated by Kenard Pak
Kokila/Penguin, 2020
32 pages, ages 4-8
ISBN: 9780399186332
Available from NLS as DB102866
"When Lina woke up, everything was quiet," begins this charming picture book for young readers. "No cars honked, no buses chugged, no garbage trucks gulped trash across the street." Lina knows at once that snow has fallen.
By invoking the unusual quiet of the city neighborhood, the author focuses the reader's attention on the sounds that are missing and sets the stage for the story that lies ahead. This is a book about discovering and delighting in the special sounds of a snowy day in the city.
On this snowy morning Lina bundles up in her winter clothes, says goodbye to her mother, and sets off down the street to visit her grandmother. Together they will make warak enab, or stuffed grape leaves, for a special family party. On her way Lina thinks about her grandmother, who is losing her sight. As she pulls her scarf around her face Lina can hardly see, and she wonders if this is how the world appears to her grandmother.
"The world sounded softer, but the noises she heard were clearer," Lina observes. She hears the "Scrrra-a-ape, scrip!" of Mrs. Watson's shovel, digging out the sidewalk. She hears the "Snyuck! Snyuck! Snick!" as her boots crunch snow into tiny waffles. Then she hears the soft "Ploomf!" as a blue jay knocks a clump of snow off a branch.
Lina begins to count the sounds she hears. She hears the "Swish-swish!" of people sweeping snow off their cars, and the "Scritch, scratch, scritch, scratch!" of skis. She notices the "Pat, pat, pat" of mittened hands making a snowman and the "Thwomp!" as someone throws a snowball at her. By the time she reaches her grandmother's place, Lina has counted eight ways to hear snow. At her grandmother's place she counts two more.
Together Lina and her grandmother stuff and roll the grape leaves, which look like little leaf cocoons. As they work together, they talk about the sounds of snow that Lina has observed and counted. Lina realizes that her grandmother was fully aware that it was a snowy morning because of the sounds she heard.
This small book has earned some impressive recognition. It was selected as one of the best children's books of 2020 by National Public Radio. It is listed as one of Powell's Best Children's Books of 2020, and it is a National Indie Bestseller. The attention is well deserved. Lina's blind grandmother is shown as capable and funny, a companion and role model for her young granddaughter. The portrayal of a Lebanese American family adds to the book's appeal. Small children will delight in imitating the “Scrrr-a-pe!” and “Scritch!” and “Ploomf!” as the book is read aloud. Most of all Ten Ways to Hear Snow is a book that will encourage young children to notice the sounds they hear and to discover how much they can learn about the world simply by listening.
by Lee Kumutat
From the Editor: The sighted public is bombarded with images all day long, from the news media, from advertisers, and from friends on social media. Yet those of us who are blind or have low vision have little or no opportunity to experience such images in a tactile form. In this article Lee Kumutat, vice president in charge of communications for the LightHouse-San Francisco, describes a new program that provides blind people with the chances to explore some of these images in a tactile format.
Have you, your child, or your student ever read a news item or watched a news bulletin on TV and thought, “I would love to know exactly what that picture is!”? During your meanderings through the world of social media, have you ever encountered a meme that's gone viral? Everybody's talking about it, and you've wanted to get your hands on it to understand why it's causing such a buzz!
Those of us who are blind or have low vision are surrounded by visual information. Sometimes the only way for us to grasp this information is to have somebody interpret it for us. Usually this interpretation is done through verbal description. Some people are amazingly skilled at explaining things with words, but verbal description remains an indirect experience.
Suppose a file containing a tactile graphic associated with a news story were delivered into your inbox? You could emboss the file yourself or have it raised on swell paper anywhere that provides access to the necessary equipment.
At the LightHouse for the Blind and Visually Impaired-San Francisco, we believe in the extra dimension a tactile representation can add to many tasks, games, recreational activities, and studies. That's before we even mention how useful tactile maps and diagrams are for learning to navigate streets or the layout of a building or for understanding how the roads connect in a tricky intersection. Of course orientation and mobility (O&M) instructors and teachers of the visually impaired know that these resources are integral to learning, but what about all the popular, incidental information people who are blind or have low vision often miss out on?
The LightHouse Media and Accessible Design Laboratory is a group of passionate, dedicated designers and producers. They want to bring graphic elements of current events to your fingertips. They also want you to be involved in choosing the graphics to be made available.
Enter Touching The News, a brand-new initiative from the LightHouse for the Blind and Visually Impaired-San Francisco.
Every two weeks we send out a poll via email, offering three choices of tactile graphics with a link for you to vote on which one you'd like to receive in your inbox.
You might find yourself thinking: I wish I could get my hands on one of those Oscar statues! Well, now you just might, without ever being at the Academy Awards ceremony. Space travel might be your obsession, and you're itching to know what the helicopter is like that recently landed on Mars. Now you might get the answer to your questions.
Greg Kehret, director of MADLab at the LightHouse, explains why this initiative is so important. "Tactile graphics are often viewed as necessary rather than incidental and fun. Of course they are absolutely essential for teaching science, math, and difficult visual concepts. But we think that by adding some fun and general interest to tactile graphics, they will become more accessible to people who can experience them in a less formal and, dare I say, more fun way."
The project has received some great feedback from users during the short time it has been up and running. One couple who are both blind or have low vision shared how useful they find the graphics. They bought a machine for raising tactile graphics but had never really found a good use for it until now.
Over the few weeks that Touching The News has been operating, users have voted for the smiley face emoji, the International Space Station, and what the Harriet Tubman twenty-dollar bill is proposed to look like, just to name three examples.
Senior Designer Naomi Rosenberg loves the challenge of not knowing what she'll be designing until the votes are all in. "We try to choose graphics we know we can make meaningful for people. We are very careful to go to more than one source for the visual information we will then work from to create something meaningful for the tactile sense. It's a challenge, but it's an interesting one."
Presently, subscribers to Touching The News are emailed a digital tactile graphic file every two weeks, and they must print the graphic on their own. However, we're aware that the average blind person still can't get their hands on these tactile images. Very few people have access to a graphics embosser or swell machine at home. We are exploring how to distribute these images by US mail as hard copy tactile graphics, embossed on paper. Your answers on this brief survey at https://bit.ly/3jZ99JS will help us determine potential funding sources and distribution logistics. We really appreciate your time and input. And if you would like a free sample of the Touching The News tactile graphic, email [email protected] with an address, and we will get one in the mail to you.
If you would like to sign up to receive emails so you too can begin to touch the news, you can subscribe by emailing us at [email protected]. Or if you'd just like to read more information, visit the Touching The News page on the LightHouse website, www.lighthouse-sf.org/ttn.
by Andrea Cataquiz
From the Editor: During the summer of 2021 the NFB sponsored STEM EQ, a virtual program that provided blind high school students with hands-on experiences in the sciences. Students met online and worked on projects that focused on spatial thinking.
In the following article STEM EQ participant Andrea Cataquiz shares her thoughts about STEM opportunities for blind students and explains how the art of origami can enhance spatial awareness. Andrea is a high school senior from Illinois.
The world and its opportunities for success are ripe for the taking for anyone who dares to take that leap of faith. However, jumping wildly into every situation isn't always the best idea. There may be multiple opportunities, but which one should a person take? What kind of knowledge does an individual need in order to succeed? Most importantly, where to start?
Perhaps we can start with children, students, and today's youth. After all, they will be the ones battling tomorrow's challenges. We can start by finding the interests and passions of these young people. Do they like sports or art? Could they spend all day surrounded by their LEGO bricks? Being blind doesn't stop us from having fun, so it is silly to believe that disabilities can keep us from our dreams.
Next we need to nurture and strengthen the passions of these children. Let them explore their world to the fullest. When something is not accessible to them, then we advocate for its correction or fix it ourselves.
Experiences of all kinds help people to grow. As blind individuals we need even more of these experiences to make up for the things we miss. I am writing to share some of my experiences with specific activities that I have enjoyed. These activities are not for everyone, but I want to share them for two reasons. First, these ideas don't generally break the bank, and they are simple enough to do with children in the safety of a home or classroom. Second, I hope that these experiences will enrich the minds of young people out there, or at least bring them some enjoyment.
The Japanese art of folding paper, origami, has a long history, but it has only become accessible to people with visual impairments in recent times. Some websites, such as the Accessible Arts and Crafts blog, provide verbal instructions for a few origami models. With these text instructions people who cannot access or do not wish to use traditional origami instructions can read the text instead. The text explains how to fold and/or orient the paper to make an origami model successfully.
While doing origami an individual, especially a blind individual, has to be aware of the changes the paper goes through as it is folded. This awareness is necessary to make sure that the instructions are carried out correctly. Otherwise, the model you set out to make will not end up the way you expected.
This awareness, known as spatial thinking or spatial reasoning, is the ability to understand the position of objects within a given space and to manipulate that information inside your head. This skill is important in such activities as mental mapping and designing objects. Spatial thinking is an especially important skill for those of us who are blind or have low vision. It helps us while navigating or when we need to understand verbal descriptions of visual information. Some good ways to practice spatial thinking are by drawing, building, dancing, playing video games, and folding origami.
Spatial thinking is a useful skill for many applications. It also happens that a lot of the things a person can do to practice spatial thinking are fun activities that you may or may not do every day. These activities can introduce young blind children to new learning experiences and prepare them for whatever the future brings.
Below are text instructions I wrote for an origami model I enjoy making. I hope you and whomever you choose to do it with will enjoy it as much as I have. Have fun!
Place a square piece of paper on a flat surface with the south edge parallel to you. Note: While folding this project, do your best to keep the edges of the paper as aligned with each other as possible. This will enable the fox to stand up when you are finished.
1. Bring one corner of the paper up to meet the opposite corner in a diagonal. Align the edges and crease the paper firmly.
2. Turn the paper so that the longest side of the triangle is parallel to you. Fold it in half by making the left and right corners meet and crease.
3. Take the top layer of folded paper and bring it up to the corner pointing north. After creasing firmly, flip over the paper and repeat the previous step for the remaining layer of paper.
4. Locate the corner on the lower right side of the model. Rotate the model so that this corner points North.
5. Estimate about an inch to an inch-and-a-half, starting from the right side of the model. Fold all the layers of the model at the same time at this point. Make sure that during and after folding this step the paper remains as aligned as possible. This is especially important for the bottom of the model that will become the legs of the fox. Note: Take your time, because this step is quite difficult to do right.
6. Move your hands along the section you just folded to the top. Carefully, partially separate the three layers of paper you find there. Each layer is made of your paper folded once. The two outermost layers will become the pointed ears of your fox. Locate the innermost layer. Find its pointed tip and the crease that slants to the left along the left side of this layer of paper. Gently press downward along the crease. When you remove your finger, the paper should bounce up just a little, and the tip of this inner layer of paper should protrude east.
7. Now, starting from the left side of the model, estimate about an inch, and fold the paper so that it is pointing to the right. As before, make sure that the bottom of the model remains aligned, because this tail after being creased will help your fox stand up.
8. Finally, hold your fox upright, and put it on your flat surface. If all went well, the fox will stand up on its own.
The American Action Fund for Blind Children and Adults knows that blind adults and children are fully capable, and that Braille literacy is an important building block of success. We provide Braille books each month to thousands of families across the United States to empower blind people. Our programs are needed now more than ever. Many schools do not distribute hard copy Braille, and our Braille books are sometimes the only Braille blind children receive.
Blind students depend on parents, teachers, and libraries for learning; and parents, teachers and libraries depend upon the American Action Fund to provide free white canes, Braille calendars, Braille books, tactile art and graphic resources, and more. The American Action Fund also supports the production of Future Reflections, an invaluable resource for parents and teachers.
We want to hear from you. Your testimonials about the programs of the American Action Fund make a difference to our outreach and fundraising efforts. Please take a couple of minutes and tell us how you, your student, or your child benefit from this magazine, from our Braille books, or from our free white canes. Send your story to [email protected] or call us at 410-659-9315 and ask for Patti Chang.
The work we do to encourage independent travel, excellence in education, and Braille literacy nationwide must be done. If you are in a position to do so, you can also make a difference by making a contribution. These programs are made possible through your support. Please help by giving a tax-deductible gift to the American Action Fund.
You can donate online by visiting our new webpage at actionfund.org. You can reach us over the phone by calling 410-659-9315, or you can send a check made out to "American Action Fund." Mail checks to 1800 Johnson Street, Baltimore, MD 21230.
To learn more about how to receive Braille books in the mail or how to donate a gently used Braille book that you no longer need, visit ShareBraille.org. Through ShareBraille your used books can remain in circulation for many years to come.
There is another easy way you can help the American Action Fund continue its work. Often the simplest and most significant way to make a charitable donation is to plan a legacy gift. It is easier than you might think. 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 percentage of your estate to an organization whose mission is important to you. Your bequest carries with it the values and ideals that have been important to you throughout your lifetime, and it supports an organization whose mission you hold dear. In addition, planning for a legacy gift may reduce the total amount of your taxable estate, which can positively impact any funds you have designated for your heirs.
The American Action Fund for Blind Children and Adults Legacy Society honors and recognizes the generosity and the vision of special 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, please 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, a Maryland nonprofit corporation, 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. 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 to us and would like to tell us about it, please contact Patti Chang so we can recognize you as a member of our Legacy Society.
Legacy gifts provide for generations of blind children and adults. Please consider the American Action Fund in your future plans. Thank you for your support!
Each year the National Federation of the Blind presents several scholarships and awards that honor blind individuals as well as teachers, professionals, entrepreneurs, and organizations whose work benefits the blind community. The following indíviduals and organizations were honored at the 2021 NFB National Convention.
Jordana M. Engebretsen of Idaho was named the 2021 Distinguished Educator of Blind Students at the Board of Directors meeting on Wednesday, July 7. Her presentation at the board meeting of the National Organization of Parents of Blind Children (NOPBC) will appear in the convention issue of Future Reflections (Volume 4, Number 4).
Learn more at https://nfb.org/about-us/press-room/national-federation-blind-names-jordana-m-engebretsen-2021-distinguished
Thirty outstanding blind scholars received NFB National Scholarships at the Convention banquet. Lizzie Muhammad-Park of Maryland won the top award, the $12,000 Kenneth Jernigan Scholarship.
For a list of this year's scholarship winners, visit https://nfb.org/about-us/press-room/national-federation-blind-announces-2021-scholarship-program-finalists.
Six outstanding innovators were presented with the Dr. Jacob Bolotin Awards at the banquet. The top award of $20,000 went to Eye Learn of Detroit, Michigan.
Learn more at https://nfb.org/about-us/press-room/national-federation-blind-awards-60000
by Carlton Anne Cook Walker
From the Editor: From July 6 through July 10, 2021, the National Federation of the Blind (NFB) held its annual national convention. Within the convention framework the National Organization of Parents of Blind Children (NOPBC) hosted its annual conference as well as a variety of workshops and programs for children and youth. In this report NOPBC President Carlton Anne Cook Walker gives an overview of the 2021 NOPBC conference. Presentations from the conference will be highlighted in the next issue of Future Reflections, Volume 40, Number 4.
As of June 5, 2021, more than six hundred parents, professionals, and allies from forty-four states, the District of Columbia, and Guam, as well as twenty-two nations, had registered to attend the NOPBC Conference at the 2021 NFB National Convention. Parents and professionals from Argentina, Australia, the Bahamas, Barbados, Brazil, Cameroon, Canada, Germany, Indonesia, Israel, Italy, the Republic of South Korea, Mexico, the Netherlands, Nigeria, North Macedonia, Pakistan, Panama, Poland, Turkey, and the United Arab Emirates all registered for the conference, entitled, "Virtual Reality: Accessible Learning, Activities, and Networking Opportunities for Blind Children and Their Families." Due to the COVID-19 pandemic, the conference was held through virtual meetings. Although they could not meet face-to-face, parents and professionals gained knowledge and built important new relationships.
The NOPBC conference consisted of sessions, workshops, and activities held on all five days of the NFB Convention. These offerings instilled high expectations for all blind children, provided information and ideas for adults supporting blind children, and offered fun and engaging activities for blind children and their families.
On Sunday, June 27, and on Thursday, July 1, we held two "Convention 411" programs to provide information and advice to individuals considering attending the NOPBC Conference and the NFB Convention. Convention confronts attendees with a host of choices. It can help to get an overview and start to sort one’s priorities.
Our 2021 NOPBC Conference, entitled "Empowering Our Children: Maximizing Skills, Opportunities, and Dreams," kicked off with the always popular Kid Talk with NFB President Mark Riccobono. President Riccobono solicited questions from the children and provided sage advice. Next, Ronza Othman, president of the National Federation of the Blind of Maryland, gave a wonderful keynote address entitled, "Living the Life I Want Because of Parent Empowerment."
As we did at last year's virtual conference, we paused our General Session and held the first of our four concurrent session breakouts. Our first set of breakouts included "NFB NEWSLINE: It's Not Just for Adults Anymore" with Jessica Beecham, NEWSLINE coordinator, NFB of Colorado; "Road to Reading: Reading to Learn the Code Using the Natural Order of Contractions" with Casey West Robertson, teacher of blind students (TBS) and NOPBC Board member; "Structured Discovery: It's Not Just For Teaching Travel" with Kristen Sims, TBS, NOMC; "Let's Get Cooking: Helping Kids of All Ages Explore the Kitchen and All Aspects of Preparing Food" with Michelle Murrey, first vice president of the Colorado Parents of Blind Children and NOPBC Board member; and "We're Not Perfect, and Our Kids Aren't Perfect, Either! Confessions of NOPBC Board members," a panel presentation from NOPBC Board members Jackie Anderson, Sarah Erb, and Jean Fultz.
When General Session resumed, NOPBC President Carlton Anne Cook Walker delivered the 2021 NOPBC Presidential Report: "Empowering Our Children—Maximizing Skills, Opportunities, and Dreams." Next we heard from three blind students: Kenia Flores (Furman University Graduate, U.S. Senate staff assistant, and first vice president of the National Association of Blind Students (NABS); Syed Mahmud Rizvi (SEO Fellow at Akin Gump Strauss Hauer & Feld, JD candidate at Harvard Law School, and former first vice president of NABS); and Cricket X. Bidleman (Rebele Intern at the First Amendment Coalition, accessibility consultant for Stanford University, M.A. Candidate at Stanford University, and president of the California Association of Blind Students) shared their experiences. In our student panel, "Guidance from Graduates," they reflected on things their families did that worked well and on what might have been better. Our families benefited so very much from their openness and from their honesty. NOPBC Board member Dr. Carla Keirns closed the session with her timely, sage, and much-needed presentation: "It's Not Just You: Growth and Resilience During Pandemic Times."
The next set of breakout sessions featured the following topics and presenters: "Accessibyte: Touch Typing, Flash Cards, Games ... Fun For All!" with Joe Jorgenson, Founder of Accessibyte; "Road to Reading: Exploring Tools to Help Children with Dyslexia Learn" with Carlton Anne Cook Walker, TBS and NOPBC president; "Travel Tips: Regaining Confidence in Travel Skills after a Year at Home" with Michelle Chacon, TBS and NOMC; "Safety and Support Training: Boundaries and Consent" with the NFB Survivor Task Force; and "The End of the IEP Road: What You Need to Know About the Transition to College" with Carol Castellano, NOPBC Board member.
We continued our breakout concurrent sessions on Wednesday. Wednesday opened with the following sessions and presenters: "What Are JAWS, ZoomText, and Fusion Anyway?" with Chancey Fleet, chair of the NFB Assistive Technology Trainers Division; "A New Generation of Braille Display: What Is the Brailliant BI 20 or 40X?" with Joel Zimba, HumanWare product specialist; "The Structured Discovery Method of Teaching Cane Travel" with Jeff Altman, NOMC; "A Life of Contradictions" with Melissa Riccobono, NOPBC Board member; and "Let's Get Involved: Community Activities for Your Child" with Terri Rupp, president, NFB of Nevada.
Our last group of breakout sessions included "Be My Eyes, Aira, and Seeing AI: Practical Tools for Productivity" with Keith Bundy, digital accessibility consultant and trainer at Siteimprove, Inc.; "What Is the QBraille XL from HIMS, and What Sets It Apart from Other Displays?" with Earle Harrison, Midwest Region sales manager at HIMS, Inc.; "Let's Talk Learning Shades: How Parents Can Use Learning Shades to Help Learn and Teach Nonvisual Skills in Travel and Beyond to Children of All Ages" with Michelle Albrecht, parent, Maryland, "Why Braille?" with Donna Genelin, parent, Virginia; and "Excuse Me, Blind Person" with Penny Duffy, NOPBC first vice president and Abby Duffy, student from New Hampshire.
A mere ten minutes after our four great hours of learning in two General Sessions and two breakout sessions on the first day, we held NOPBC Family Game Time. We discussed accessibility and hosted breakout rooms on topics of interest to attendees, including actual game playing itself!
We were six hours into our first day, but we were not ready to quit! Our NOPBC Family Open House welcomed one and all for questions, conversation, and fellowship. With the invaluable assistance of our NFB Zoom host, we welcomed people into breakout rooms based on topics of mutual interest.
Our NOPBC Annual Meeting kicked off with an Exhibitor Fair. Somehow, in one hour, we managed to hear and learn from these great exhibitors: NFB education programs, National Association of Blind Students (NABS), HumanWare, Learning Ally, American Printing House for the Blind, Spectrum Access, Vispero (Freedom Scientific), Bookshare/Benetech, and Pearson Learning.
When the exhibitors finished their presentations, we were full of knowledge—and ready for more! Our Annual Meeting certainly fulfilled the promise of its title, "Journey to Empowerment." First, we heard from Anil Lewis, the executive director of NFB Blindness Initiatives, as he took us "On the Road with NFB Blindness Initiatives." Michelle Chacon, TBS, COMS, and 2014 NFB Blind Educator Award Recipient, spoke to us about the "Pit Stop Support" offered to blind students by the NFB of Colorado. Mike Wood, Vispero's strategic accounts manager, education, invited us to join in "Uncovering Hidden Paths with Vispero/Freedom Scientific" to empower blind individuals of all ages and abilities.
Middle school students Boon Dumrong, an eighth-grader in Washington; and Oriana Riccobono, a sixth-grade student in Maryland shared how they are empowering themselves in our panel, "Kid Power: Tales from the Road."
Jordana Elgebretsen of Idaho, the 2021 NFB Distinguished Educator of Blind Students, presented her keynote address: "Empowering or Disqualifying—What Are We Doing?" and also answered questions from attendees. Our Parent Power panel, "Travelling with Friends," brought insights, ideas, and inspiration from parent leaders Ashleigh Moon, president of Arizona Parents of Blind Children; Beth Sellers, president of Virginia Parents of Blind Children; and Donna Genelin, Virginia parent.
The final hour of our Annual Meeting turned to division business. We first reminded attendees about the NFB PAC (Pre-Authorized Contribution) Plan and encouraged all to contribute to this vital fundraising program. After hearing and approving a proposed constitutional amendment to change our dues year and to increase our membership fee, the Nominating Committee presented its slate of nominees for the unexpired two-year term of the second vice president and for all ten Board positions. The slate presented was as follows: Sarah Erb, unexpired term of second vice president and Board members Jackie Anderson; Amira Assad-Lucas; Donna Genelin; Jeannette Jones; Carla Keirns; Maura Kutnyak; Tabby Mitchell; Ashleigh Moon; Melissa Riccobono; and Casey West Robertson.
We then recognized and thanked the five members leaving our Board: Kimberly Banks, Jean Fultz, Pamela Gebert, Michelle Murrey, and Corbb O'Connor. We are grateful for their years of dedicated service to the NOPBC. We reminded them that we are a family, and no one ever really leaves.
The membership voted upon and approved the report of the Nominating Committee. We then held the election. There were no nominations from the floor, and each individual presented by the Nominating Committee was elected to the office for which that individual was nominated.
Our Annual Meeting ran longer than expected, so we postponed our scheduled NOPBC Brainstorming Session until after the NOPBC Conference and NFB Convention.
At in-person Conferences, we usually hold "IEP Night," a popular series of sessions on Individualized Education Plans (IEPs) on the evening of the first day of General Session. Scheduling is different in virtual meetings, especially since our Board members span six different time zones, and we always defer to NFB programming (affiliate caucuses and General Sessions). With apologies to our friends in Hawaii and Alaska, we held our IEP sessions on Friday and Saturday mornings. We had planned an "Unconference," but we did not receive many questions beforehand, so we held broad-based information sessions. We also offered breakout sessions, and several parents took advantage of these to dive into topics of personal interest.
With support from multiple partners and spearheaded by the team at the Southern Arizona Association for the Visually Impaired (SAAVI), this year's Youth Track activities continued to be fabulous. Five hours of Youth Track sessions on Tuesday included: "It's Your Convention Experience," "Go Where You Want When You Want with Confidence," and "National Cryptologic Museum Tour" (provided by our host affiliate, the NFB of Maryland). Wednesday brought "Looking Good, Feeling Good," "It's All about the J.O.B," and "Resolutions Explained."
On Thursday our youth discussed "Your Life, Your Body, Your Power" and got together in the "Calling All Gamers!" Youth Track session. Saturday wrapped up Youth Track with "Advocacy in the Family: Expressing Yourself with the People You Love the Most."
As noted above, NOPBC is a proud division of the National Federation of the Blind. We veteran members of the NOPBC and NFB know the vital importance of the support we receive from the Federation, and we make certain that families new to us understand our relationship to and with the Federation. One way we show our appreciation of and support for our Federation is through the PAC plan. We encourage our parents and allies to begin a PAC plan or add to an existing one, noting NOPBC as the division they support. Although we were neck-and-neck for the PAC Mule prize, the wonderful Seniors Division won it this year. We offer them our hearty congratulations, and we look forward to the opportunity to bring a PAC Mule home from New Orleans in 2022!
Lucy Devan Casting
Contact: [email protected]
Lucy Bevan Casting is currently searching for a blind girl to play a key guest speaking role in an upcoming Netflix limited TV series. They are looking for a girl who is blind or partially sighted/low vision between the ages of six and sixteen. The character is thoughtful, curious, intelligent, and courageous, and she must speak fluent English. Shooting will take place in Europe in 2022. No previous acting experience is necessary. Applications must be submitted by a teacher, parent, or legal guardian. If your child would like to be considered, please send their DOB, height, location, and a recent photo in one email. The agency will be in touch if they would like your child to audition.
Accessibility Boutiques
Contact: [email protected]
410-659-9314, Option 5
Accessibility boutiques and seminars are workshops presented by the NFB’s access technology experts that provide introductions to accessibility best practices and the latest trends in access technology. Past topics have included "Getting the Most out of Microsoft Office with a Screen Reader" and "Gaming for Everyone."
ShareBraille
ShareBraille.org
ShareBraille.org is a free service from the American Action Fund for Blind Children and Adults that facilitates the exchange of Braille books through an online community-run library. Its mission is to promote literacy among the blind by increasing the use and life of Braille materials. ShareBraille.org works by connecting those who want Braille books with those who have Braille books to give away. After you register and log in, you can share your own Braille books or browse the growing catalog. If a user requests a book that you have offered to share, the book can be shipped at no cost within the United States and Canada as Free Matter for the Blind.
Babies with CVI: Nurturing Visual Abilities and Development in Early Childhood
by Anne McComiskey
APH Press
https://www.aph.org/product/babies-with-cvi-nurturing-visual-abilities-and-development-in-early-childhood
Available in print and ePub editions
This book is geared to professionals, but parents may also find it useful. Material emphasizes ways to work with children from birth to age three who are affected by cortical visual impairment (CVI). The guide provides a checklist with specific tasks parents and teachers can perform to provide visual stimulation, based on the idea that brain-related problems sometimes can be mended or bypassed in very young children.
APH ConnectCenter Transition Hub
www.aphconnectcenter.org APHConnectCenter
Contact: Sara Brown, [email protected]
502-608-3271
The American Printing House for the Blind celebrates the launch of APH ConnectCenter Transition Hub, a one-stop comprehensive searchable national database of transition programs. The resource is available for school-age students, teachers of the visually impaired, vocational rehabilitation professionals, and family members. Users can search for programs by state, program type, attendance fees, and whether the program is offered year-round or seasonally. State schools for the blind, blindness vocational rehabilitation agencies, and partner nonprofit agencies that offer transition programs for teens and young adults will have the ability to register with the Transition Hub. The Transition Hub is made possible through a grant from the Gibney Foundation.
Hire Me SC
https://www.hiremesc.org/families
Able South Carolina, a center for independent living, has developed an initiative called Hire Me SC to change the culture of disability employment in South Carolina. Hire Me SC recently launched new employment resources for families of people with disabilities to help build strong advocates who empower their loved ones to find their dream job. Although the campaign is based in South Carolina, the tools and resources provided can have a national reach.
Study on Use of Tactile Maps
https://pennstate.qualtrics.com/jfe/form/SV9MiiWm2XYtiaoBg
Contact: Harrison Cole, [email protected]
A PhD student in the Department of Geography at Penn State is looking for people who would like to contribute to a study on the use of tactile maps to make natural disaster planning more accessible. The goal is to determine how tactile maps can be used for evaluating flood damage risk. His hope is that this research will help make tactile maps become a standard and convenient part of natural disaster planning. Participants must be legally blind and eighteen years of age or more.
Testing Maps and Search Apps
Contact: Stacie Dubnow, [email protected]
As part of our BUILD program, the National Federation of the Blind is searching for blind and low-vision individuals to participate in one hour of remote user testing of the accessibility maps and search apps. Compensation between $115.00 and $150.00 will be provided. Participants must be eighteen years of age or more and must rely on screen-reading software on their smartphone, must use an Android phone with system version 9.0 or higher, and use Google Maps and be open to updating the app to the latest version. In addition to a smartphone, participants must have access to a computer or tablet with an internet connection or to a land line phone, and they must consent to being observed. Interested persons who meet these criteria should email Stacie Dubnow with the subject line "Eyesquare Build Project Applicant."
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