American Action Fund for Blind Children and Adults
Future Reflections Spring 2020 NOPBC UPDATE
The Best Reality Show Ever: Real Families of the NOPBC
by Carlton Anne Cook Walker
From the Editor: Carlton Anne Cook Walker serves as president of the National Organization of Parents of Blind Children (NOPBC), a division of the National Federation of the Blind. At the 2020 NFB convention, which was held virtually from July 14-18, she delivered this report on the past year's activities and developments.
We really are a Federation family. This NOPBC conference and the NFB national convention are our annual family reunion. You may already have participated in a virtual or socially distanced family gathering this year. Like many large families, our Federation family often breaks into small groups as well as meeting with the entire clan. Groups of individuals with similar interests gather in divisions; the NOPBC is one of the twenty-four divisions of the NFB. We also connect with NFB members through our state affiliates and our local chapters. No matter how many or how few conferences and conventions you have attended in the past, we are thrilled to welcome you to the 2020 Federation Family Reunion.
I attended my first NOPBC conference and NFB convention in 2006 in Dallas, Texas. Before that time, my child's blindness didn't seem exactly real. Sure, Anna Catherine was getting some Braille services. They were minimal, and the TVI (teacher of the visually impaired) was really pushing the CCTV—even though our child had to work alone in a corner because "that's where the outlet is." That TVI was also very firm that Anna Catherine did not need a long white cane, and I attributed her frequent trips and falls as a genetic continuation of my lifelong clumsiness. In other words, the school was treating Anna Catherine as a sighted kid—but one that was somewhat broken because the child couldn't see that well. In essence, Anna Catherine was living the life of a "virtual" sighted person.
In Dallas my family found our Federation family, and we found reality. With the knowledge we gained and the support we received at the NOPBC conference and the NFB convention, we learned that Anna Catherine did not need to be a "virtual" sighted student—or a "virtual" sighted person. We learned that, with blindness skills, Anna Catherine could emerge from a "virtual" life into reality. While her TVI and other teachers wanted to keep my child in the "virtual" status that was comfortable for them, our family experienced a taste of a much better reality. We discovered a reality where Anna Catherine would develop the skills she needed to make decisions based on her dreams and not on artificial barriers necessitated by a "virtual" education.
A few months before my family's first NOPBC conference and NFB convention, a "reality" television program, the Real Housewives of Orange County, premiered on the Bravo Network. Real Housewives of Orange County is about as far from the reality of my life as is fathomable. In fact, I'd wager that none of us live the extravagant, pampered lifestyles depicted in the Real Housewives shows.
No, our realities are quite different. Instead of hours-long, margarita-fueled lunches, we have hours-long, angst-filled IEP meetings. Instead of tearing down other parents on camera, we support and lift each other up in our Facebook group and our listserv. Instead of lamenting and denigrating the accomplishments of others, we burst with pride and celebrate their victories as if they were our own. We are the Real Families of the NOPBC, and we live the best reality show on Earth!
It's been a little more than one year since the end of our last family reunion—umm, conference—in Las Vegas last July. It seems like we packed a lot into that year, doesn't it?
As we returned home from Las Vegas, we prepared for school in the fall. Real Families of the NOPBC ushered their children into elementary school. Early elementary school focuses on literacy and early mathematics. Our families faced real crises: many students' Braille skills lagged far behind what they needed to fully access their school curricula. Some schools suggested continued reliance on poor vision, but our families know better. We know that a child who cannot read the extra-large print in kindergarten without magnification or exhaustion will not be able to keep up; every year that print gets smaller, and there is more of it on every page.
The Real Families of the NOPBC leaned on one another as teachers infuse educational technology into almost every activity in earlier and earlier grades. We help each other understand that our children need to know how to access an iPad nonvisually and how to use a computer without needing a mouse. We call on our blind adult Federation family members to help us know what is possible and, sometimes, to teach these essential nonvisual access technology skills to our children. With these skills they may unlock the worlds of information and entertainment their typically sighted peers enjoy.
As fall settled in, the Real Families of the NOPBC continued to thrive. We shared fun fall activities with all of our children, and we discussed ways to make family activities inclusive and fun for all. From creating tactile graphics with leaves and wax crayons to making apple pies from scratch without using any vision at all, our children developed competence and confidence in themselves and their abilities. Halloween brought a wonderful and motivating opportunity to practice independent travel skills. After all, running around with your friends and getting free candy is pretty darn fun.
Thanksgiving break brought family gatherings for many. Sometimes our extended family members do not understand what we know is true: our blind children are children first, last, and always. We leaned on one another when anxious relatives attempted to "protect" our children. Our Federation family helped us gently remind relatives that our children are capable of joining in family activities and in age-appropriate activities with their peers—including clearing the table.
Holiday gift-giving time brought challenges to many who asked, "What is a good gift for a blind child?" The Real Families of the NOPBC and our Federation family reminded us that our children are children first. Instead of looking for "blind child" gifts, we must first examine the child. Music and books, toys and games, crafts supplies and athletic equipment, musical instruments and electronics, gardening and woodworking tools—all these things and more are appropriate gifts for blind children. Once we know the child's particular interests, you can bet we'll come up with a long list of great gift ideas.
The holiday break from school proved challenging to some of our families. Some schools made our blind students leave their access technology at school. For many children this meant limiting access to books and other information sources. After all, the local library often isn't too accessible for our children. We helped parents advocate for bringing technology home over school breaks, and we shared resources for accessible games and for free Braille books.
We all celebrated the new year of 2020 with great expectations. In January Federationists gathered at our national office in Baltimore to train for our summer education programs, Braille Enrichment for Literacy and Learning (NFB BELL Academy). In February Federationists from across the nation gathered in Washington, DC to make sure our Congressional representatives understand the crucial importance of accessibility for blind individuals of all ages. Our Washington Seminar involved early mornings, late nights, and long days of hard work. The time we spent together was far more meaningful and fulfilling than any of the indulgent jaunts of the "Real Housewives" have ever been.
You probably know that the saying, "May you live in interesting times" is a centuries-old curse. March definitely brought some interesting times to us all. We live in interesting times right now, but we will not allow ourselves to be cursed.
All of a sudden last March, businesses and schools were closing. Many students were sent home without the access technology they needed. Some schools openly attacked students with IEPs as the "problem" with providing online educational opportunities to nondisabled students. Suddenly, it appeared that years of progress toward inclusive education would be wiped away.
But our Federation family did not let that happen. The Real Families of the NOPBC sprang into action. We shared the multiple and frequent information updates from the United States Department of Education as well as guidance on what they meant and how they impacted blind children and their educational rights. We shared long-existing resources and those that became available as a result of the COVID-19 crisis. We welcomed new families and provided them with the information and assistance they needed. As Lilo noted in the Disney movie, "Family means no one gets left behind."
We Real Families of the NOPBC also took advantage of accessible online gathering tools. NOPBC hosted two Zoom series last spring: "Fabulous Fridays" and "What DO You Want Wednesdays," which grew into "What Works Wednesdays." In addition, our parent division in the Show-Me state hosted the Missouri Parents of Blind Children Seminar on Zoom during the NFB of Missouri Together at Home Convention. Throughout our existence, our NOPBC families have been scattered across the nation; we know how to keep our family ties strong over the miles.
Our Federation family remained hard at work as well. The National Federation of the Blind developed a wealth of resources for blind children and their families. They included the NFB Distance Education Resources, offering activities, how-to videos, Braille Story Time videos, and interactive lessons using nonvisual skills. NFB also developed a page of COVID-19 Resources that included valuable information such as a guide to the guidance every state department of education provided to its schools. We recognized that many families were receiving false information from their local school officials.
As you know, COVID-19 still impairs our ability to gather together safely. While many schools and agencies curtailed their educational offerings, NFB committed to providing NFB BELL Academy this summer as NFB BELL Academy In-Home Edition. Three two-week sessions will serve hundreds of blind children and support them in Braille and other nonvisual skills.
The College Board is an agency that administers many high-stakes tests, including the SAT, the PSAT, and Advanced Placement (AP) exams. As the COVID-19 crisis deepened, the College Board flouted federal law and refused to provide hard copy Braille and tactile graphics to blind and deafblind students for their Advanced Placement examinations. Again, they were trying to roll back the decades of progress we have made in the area of access to educational materials. When a high school junior from New Jersey, Kaleigh Brendle, brought this matter to our attention, the NFB quickly mobilized our advocacy resources and enlisted the assistance of Brown, Goldstein & Levy, LLP, nationally recognized experts in disability law. We truly "made a federal case out of it." Kaleigh filed a complaint against the College Board with the United States Department of Education Office of Civil Rights (OCR) on behalf of herself and four other blind students named in the complaint, as well as all other blind and deafblind students who were registered to take AP examinations from the College Board in May 2020. Before the end of the month, the complaint was settled out of court on terms that provided meaningful access to hard copy Braille and tactile graphics for all students wrongly stripped of this access. No, it's not the table-flipping antics of some Real Housewives episodes. We know how to flip something far more important, discriminatory actions that threaten to rob us and our children of our hard-won civil rights.
While many slowed down as quarantines and lockdowns dragged on, our Federation family and the Real Families of the NOPBC did not stop to rest. In addition to developing our Distance Education Resources and the NFB BELL Academy In-Home Edition, as well as sustaining and bolstering our families through the ups and downs of regular life in a COVID environment, we had a conference and a convention to plan. And here we are.
We are so glad you have joined us this week at this family reunion! We look forward to getting to know you better this week and continuing our relationships throughout the year. The Bravo television network may keep its Real Housewives franchises. We are living the best reality show ever; we are the Real Families of the NOPBC.