Braille Monitor August/September 2008
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by Barbara Pierce
The place was the old Muehlebach Hotel in Kansas City, Missouri, and the year was 1983. Kenneth Jernigan, then president of the National Federation of the Blind, was in the chair at a meeting that participants would look back upon with pride as the establishment of the Parents of Blind Children (POBC) Division. Dr. Jernigan did not usually preside when divisions came into existence, but this group was so dear to his heart and potentially so important to the strength and direction of the entire organization that he decided to do what he could to ensure that it got off on the right foot. He and those inaugural members succeeded beyond their fondest hopes and most optimistic dreams.
An almost entirely new generation of parents and supporters gathered on June 29, 2008, in the Hilton Anatole Hotel in Dallas, Texas, to celebrate twenty-five years of that organization’s growth and expansion. This is a report of that celebration and the 2008 activities of the National Organization of Parents of Blind Children (NOPBC). The name may have changed across the years, but the heart and soul of the division have only become better defined and more powerfully active.
At that inaugural meeting Susan Ford was elected the division’s first president, and Barbara Cheadle was elected its treasurer. Two years later in Louisville, Barbara Cheadle, who was already editing Future Reflections, became POBC president. Within a year she was working to expand the number of parent divisions at the state level. Ruby Ryles soon joined the division’s board and in the early nineties became its first vice president before heading off into the wilds of academe to earn a PhD, putting academic heft behind her professional and personal convictions about the importance of Braille in the education of blind children. In its early years Doris Willoughby contributed her professional expertise to the organization and wrote and co-wrote landmark texts that fleshed out the concept of establishing high expectations for blind students in the classroom and step by step showed teachers and parents how to do it.
In 1984 Carol Castellano gave birth to a premature daughter, who came home from the hospital with an entire range of problems of prematurity, including blindness. A social worker gave Carol some of the NFB literature that was beginning to appear. She described the organization as a radical bunch of troublemakers. The advice this group gave was pretty good, Carol was warned, but the group itself was nothing but trouble. Carol immediately contacted Barbara Cheadle and joined forces with the rabblerousers. She has been helping to write the books and lead the charge for reform ever since.
Twenty-five years have flown by, and thousands of families with blind children have benefitted from NOPBC campaigns for Braille availability for all blind students, canes in the hands of all young blind children, and Braille and other accessible textbooks in the hands of the students who need them at the same time as their sighted classmates get theirs. None of these battles has been won across the board, but the battle has been engaged everywhere, and school officials are beginning to understand what they are expected to provide, and parents in every state are learning where to turn for help getting what their children need.
NOPBC activities at NFB national conventions have come to be recognized as the single most thorough and effective crash course in parenting a blind child that a family can receive. This year’s program was no exception. The teen track is coming to be a week-long series of activities and supervised hang-out opportunities for blind and sighted teens that provides fun, insight, and learning. The younger kids have NFB Camp during the week, but they too are enjoying more and more workshops specially designed to meet their needs and interests. Parents of blind children face many different problems: stimulation in the early years, homeschooling, IEP development, early cane travel, help for multiply disabled youngsters, access to math and science, and the list goes on almost endlessly. Yet each year the NOPBC meets the challenge of addressing the entire range of parent and student needs while constantly challenging every family to raise its expectations and tap the resources available to it in the division and the NFB as a whole.
“Remember the Past, Imagine the Future” was the title of this year’s NOPBC seminar. To open it, President Maurer sat down with the kids to talk about the things that interested them. Then a panel of younger students talked about what was on their minds. Carrie Gilmer then showed a PowerPoint presentation with photos and audio, highlighting the history of the NOPBC. The audience was captivated to see and hear Dr. Jernigan call the organizing meeting to order and the group elect its first officers. They watched and listened to NOPBC leaders grow in confidence and skill as the years rolled by. The morning session closed with Carol Castellano’s tribute to Barbara Cheadle and the immeasurable impact she has had on the lives and parenting of an entire generation of families of blind children. Carol concluded by pointing out that through the years Barbara had lacked only one tool of excellent leadership, a gavel. She then presented Barbara with a beautifully finished rosewood gavel and wooden base inscribed with her name and the dates of her NOPBC presidency.
Barbara responded to this tribute by inquiring where the coffin was, since that many lovely things were not usually said about a person before the funeral service. She went on to recall for an audience mostly too new to have heard the story that, when her own blind toddler Chaz was just beginning to acquire the skills of blindness, she learned firsthand about the depth of the discrimination he would face when he began searching for a job. She tried to persuade a work colleague at the Red Cross to consider hiring a blind employee. The woman, herself married to a legally blind man who, like Chaz, had significant residual vision, flat out refused to consider a legally blind candidate. Barbara realized at that moment that equipping her son with the blindness tools he needed to live and work in the world would not be enough. She had to change the world he would face as an adult. She has been about that work ever since. Barbara went on to assure the group that, though she was retiring from office this year, she was not going anywhere. She will continue to edit Future Reflections and advise the division.
During the remainder of the morning blind children and adult family members could choose from a number of workshop offerings: music Braille, the abacus, early cane use, adapting board games, preparing for more independence as a multiply disabled blind adult, helping low-vision kids adapt to blindness, and feeling at ease at your first convention with more than two thousand people using canes or dogs. In the afternoon kids did arts and crafts by age group while their parents chose from another array of hour-long workshops. A sequence of two workshops was available for parents of preschoolers, elementary students, and teens and young adults. Separate sessions were also available for families of multiply disabled children and homeschoolers.
Monday morning, families could take advantage of the growing number of cane travel instructors at convention by signing up for cane walks in which kids and sometimes parents got a travel lesson under sleepshades with an expert in the structured-discovery method. These cane walks have become a popular feature of parent activities. That afternoon teens and parents could learn more about chemistry and the adaptive equipment that makes it possible for blind students to take full advantage of chemistry labs.
Tuesday afternoon the division conducted its annual meeting, following which those interested in strengthening state and local parent organizations met to trade ideas and report on their successes. During the remainder of convention week, evenings and other free time were filled with valuable programs on IEP advocacy, evaluating assessments, encouraging kids to become really active, and much more.
Teens from twelve to eighteen had their own programming all week long. The teen hospitality drop-in room was open lunchtimes and some other times. Supervised by Brigid Doherty, it provided blind and sighted teens a safe place to hang out and get to know other teens. Participation in this year’s youth track was not for the faint of heart as teens learned the art of step dancing from Faith Penn, a college student from Texas, and tested their endurance during power yoga instruction by Janice Jeang, summer intern at the NFB Jernigan Institute. Teens also showed off their creativity as they presented their own top ten lists for the David Letterman Show. Amidst giggles and forgotten lines, small groups of youth shared what they believed to be the ten most important things the public should know about blindness.
Nearly every NFB division turned out for the youth track’s division meet and greet held on July 1. Representatives talked to the youth about their divisions and invited them to attend their convention meetings. At least three of the teens who went to division meetings as a result of that day’s program were elected to a division board. The youth wrapped up the week in typical teen style—dancing the night away and singing their favorite songs at the tops of their lungs.
However, the event that all those who attended will remember longest was the silver anniversary buffet dinner and program held on Sunday evening, June 29. Laura Weber, president of the parents of blind children division in Texas, coordinated the production of a full-color program commemorating the organization’s history. Braille and print editions of this beautiful document were available that evening to the 240 who attended the dinner and the overflow audience who joined the event in time for the program. Anyone who would like to order a single copy of the print program for $10 can contact Barbara Cheadle at <[email protected]> to place an order.
Carrie Gilmer, incoming NOPBC president, and her husband Phil Richardson created a second PowerPoint presentation of NOPBC history that stirred fond memories for many in the audience. Then Ruby Ryles was presented with the Dan Ryles Memorial Award. Dan, whom we all came to know through Ruby’s speeches and writings and Dan’s own speeches, especially, “Mean like my Mom,” died unexpectedly in July of 2007. His mother was of course deeply touched by this tribute to Dan and to her. She spoke movingly of Dan’s life and her personal development within and commitment to the National Federation of the Blind.
Handmade centerpieces adorned
At this celebration the National Organization of Parents of Blind Children also initiated the Twig Bender Awards, to be given to those whose work has influenced the direction in which our blind children have grown. NOPBC leaders decided this first year to name one Twig Bender for each year of the organization’s existence and one to grow on. The recipients were invited to come to the platform to receive their medallions. Carrie Gilmer placed the medallion ribbon around the neck of each recipient, saying something fitting about each person’s contribution to the organization. Those honored were Carol Castellano, Barbara Cheadle, John Cheadle, Joe Cutter, Susan Ford, Marty Greiser, Sandy Halverson, Allen Harris, Joy Harris, Julie Hunter, Nadine Jacobson, Kenneth Jernigan, Mary Ellen Jernigan, Denise Mackenstadt, Marc Maurer, Carla McQuillan, Abraham Nemeth, Barbara Pierce, Ruby Ryles, Fred Schroeder, Debbie Kent Stein, Gail Wagner, Ramona Walhof, Loretta White, Doris Willoughby, and Joanne Wilson.Brief biographies of the award recipients appeared in the program, as did memories and tributes from supporters across the country. The entire event was a tribute to the organizational skills and the meticulous planning of the NOPBC leaders and members who worked hard to make the evening a success. The food was delicious and included choices that made even the youngest guests happy. The program was just an hour long and kept moving so that even the kids stayed remarkably interested. In short, those who plan the golden anniversary celebration will have a difficult act to follow.