Future Reflections        Winter 2013

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The Nightmare and the Dream

by Carlton Anne Cook Walker

Carlton Anne Cook WalkerFrom the Editor: At the 2012 convention of the National Federation of the Blind, the National Organization of Parents of Blind Children (NOPBC) elected Carlton Walker to serve as its next president. In this article, Carlton introduces herself to the readers of Future Reflections. She shares her concerns for today's blind children and her vision of how the NOPBC can make a positive difference.

At its annual meeting last July, the National Organization of Parents of Blind Children (NOPBC) elected me as its president. I am humbled by this honor, and I look forward to working with each of you to continue the vital work of the NOPBC for blind children and their parents. I take this opportunity to introduce myself to the readers of Future Reflections and to share my vision of our future.

I am a mother, a wife, a teacher of blind students, and an attorney. Law school came first, then marriage to Stephen Walker, and instant motherhood to Kenny (ten at the time) and Stephanie (who was then nine). I have run a solo, general-practice law firm since 1997, and I still serve as solicitor to several municipalities in south central Pennsylvania.

Background

Since 2009, I have served as a full-time teacher of students with blindness/visual impairment. I joined the NOPBC in 2006. I became a board member and served as second vice president before I was elected to the presidency in July 2012.

In 2007 a group of parents in Pennsylvania restarted the Pennsylvania Parents of Blind Children. I served as its president until 2010, and I remain on its board. I have also had the honor of serving on the board of Pennsylvania's NFB affiliate and on the advisory committee to our state's blindness agency.

About My Child

My introduction to blindness came at a pediatric eye exam in 2003. My two-year-old daughter, Anna Catherine, was being checked for "lazy eye," or amblyopia. Amblyopia runs in my family, and we had noticed that Anna's left eye tended to drift off to the side. We soon found that she had refractive amblyopia and a lot more.

Anna was born eight days overdue at a robust eight pounds, ten ounces. A series of health problems plagued the first year of her life, resulting in the failure of her eyes to develop properly. She has no central vision, scatomas (dark spots) in her peripheral vision, and an acuity between 20/200 and 20/400 for near and distance vision.

Anna is now eleven years old and a sixth grader at Yellow Breeches Middle School in Boiling Springs, Pennsylvania. Though she can read enlarged print, it tires her eyes. Though she can use her vision for travel most of the time, she has no depth perception and sometimes fails to notice objects in her path.

Anna uses a combination of print and Braille for reading and writing. In addition to literary Braille, she has learned Nemeth Code for math and science and Braille music for music class. Anna uses a long white cane for travel.

By learning the skills of blindness and using nonvisual techniques and tools, Anna does not let her limited sight hold her back. At school she plays flute in the band and sings in chorus. Outside of school, Anna is involved with Youth Group and Handbells at church. She keeps in touch with blind friends all over the country via telephone, and she plays golf and chess whenever she gets the opportunity. She surfs YouTube for all things Harry Potter, and she is obsessed with her clothing, hair, and all things related to fashion. She puts off her homework and argues with her parents. In other words, she is a typical tween.

Finding Our Way

When Stephen and I learned about Anna's blindness, we did not know what to do. Back then, I didn't know what "significant visual impairment" really meant, and the ophthalmologists were not very helpful. As time went on, Anna's vision did not meet her expanding needs in the academic, recreational, or social realms. Though she received early intervention services for other issues, no one seemed able to explain how we could help Anna deal with her visual impairment.

I contacted the nearest agency for the blind, which was forty miles away. The representative seemed flustered when I told her that Anna was three years old. "We only work with adults," she explained. I felt I had nowhere to turn.

Through an unlikely series of coincidences and good fortune, I received information about an organization called the National Federation of the Blind. I discovered that the NFB even had a division devoted to children, the National Organization of Parents of Blind Children. Better still, there was an upcoming conference specifically devoted to young children, the Beginnings and Blueprints Conference at the National Center for the Blind in Baltimore, Maryland. As we drove down the Interstate toward Baltimore, Stephen and I had no idea what was in store for us. We only knew that we needed help.

The NFB staff, members, and parents gave us more than we ever could have imagined. We met blind teens and adults who embodied the possibilities for Anna's future; we found hope. We learned about the tools and skills of blindness; we found guidance. We developed relationships with phenomenal people who believed in Anna and cared about her; we found a family.

However, when we returned home to share all this great information with Anna's school, the reception was less than warm. We had to fight for instruction in blindness skills, and the instruction Anna did receive was not always of the highest quality. With guidance from many blind adults and from other parents, I delved into blindness education advocacy. I began to make presentations to parents, teachers, and other attorneys about special education and blindness education in particular. I went back to school to earn a Master of Education in Visual and Multiple Impairments. I have worked in the Harrisburg area as a teacher of students with blindness/visual impairment since 2009.

My Nightmare

When I reflect back on this journey, I often ponder, "Where would we be if we had not found the NFB and the NOPBC?" The answer is not a pretty one.

Without the NFB and the NOPBC, Anna would not have learned Braille. By this time, she would likely be using only auditory input and output--and she would be functionally illiterate. Anna would not have a cane. She would need to walk with a sighted guide in unfamiliar locations. In familiar settings, she would run into people, or she would move very slowly down crowded school hallways, dragging her hand along the walls. Several times a day she would trip or fall down. She would develop a fear of traveling by herself.

Anna would not have an independent spirit. She would define herself as "impaired" because she would not have the alternative techniques of blindness. She would not have the skills she needs to live the life of a typical eleven-year-old.

Without the NFB and the NOPBC, I would feel alone. My sense of isolation would be overwhelming. I would know that something was missing from Anna's life, but I would have no idea how to find it for her. I would be completely reliant upon a system that has low expectations for my child. I would feel like a failure as a parent.

My Dream

Unfortunately, my nightmare is a reality for far too many parents and children. The NOPBC and NFB transform lives, but two vital ingredients are required for this transformation.

First, we need the continued experience and energy of members in order to provide vital information and services. We also need financial support. Parent chapters (POBCs) at the state level help support local parents. The NOPBC supports existing POBCs and provides resources to states that want to start new POBC chapters.

Second, we need to reach more parents of blind children. All too often, parents only hear about things their child cannot do. High expectations are essential to the development of all children. Blindness is a characteristic that need not define a child or limit that child's future. All parents of blind children deserve to know about the support and information available from the NOPBC and the NFB.

This July in Orlando, Florida, we will hold the thirtieth NOPBC Annual Conference. At that conference, we will offer multiple opportunities for parents to learn from blind adults and professionals in the blindness field. Parents will learn at seminars and breakout sessions, through hands-on activities, and via informal, one-on-one personal interactions. We also offer a variety of programs for blind children. There will be activities where they can learn and practice new skills of blindness. They will have unparalleled opportunities to meet and make friends with other blind children from across the country.

All blind children have the right to learn the skills of blindness that will allow them to become as independent and productive as they would be if they were not blind. All parents of blind children deserve to have a community of parents and blind adults that understands where they are and where they are headed, a community that can support them along the path. The NOPBC continues to explore new ways to achieve these goals. Together we will make the dream come true for parents and children throughout the nation!

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