by Laura Weber
From the Editor: One of the recordings I listened to after the national convention was of the parents' seminar held on July 3, 2011, in Orlando. I thought the introductory remarks made by Laura Weber, president of the National Organization of Parents of Blind Children, pointedly and concisely summarized what we do for blind people and how extraordinarily important it is. Dr. Jernigan used to remind us that what we do is serious business. Most of us are volunteers. Often we find it hard to make time for the work that needs to be done. Sometimes, when we look at all the work to be done, it is easy to be overwhelmed and to refrain from taking the small steps that will further our progress toward redefining what it means to be blind.
I thank Laura for briefly articulating what it means to be a member of the National Federation of the Blind and communicating our responsibility to young people, our duty to their parents, and the challenges we face in making the world what we want it to be for all of us. This is what she said:
Good morning, and welcome to Orlando. My name is Laura Weber, and I’m the president of the National Organization of Parents of Blind Children, the parents division of the National Federation of the Blind. On behalf of the NOPBC I want to welcome you to our annual conference for parents and teachers.
Our theme this year is "When I Grow Up," and I believe that it really captures what the NOPBC is all about. My daughter Lindsay is eight years old. We found out that she was blind due to Leber’s congenital amaurosis when she was three months old. Unfortunately, a diagnosis was the only thing the doctors gave us. We weren’t referred to early childhood intervention services. We weren’t referred to a parent group. We weren’t given books, brochures, or a list of references. We were just sent home.
I started searching the Internet for support groups and information, and for the most part it was scary and depressing. I read articles about blindness that reported the low employment rate and high illiteracy rate among blind adults. I met other parents of blind children, and the message I got from them was how hard things were going to be. They talked about IEPs and ARDs and TVIs and O&Ms--and lots of other acronyms that flew right over my head. They told me that I would be in a constant battle with the school system and with insurance companies to get Lindsay the services she needed. They told me that my daughter would be discriminated against and that I’d need to become an expert on the law and on advocacy. I got a lot of information but no real answers and certainly no positive support.
Then I got in touch with the National Federation of the Blind. I requested information from its parents division, the National Organization of Parents of Blind Children, and I can’t explain what it meant to me to hear—for the first time—positive things about blindness and about what Lindsay could accomplish. I read information packets and Kernel Books and presidential addresses, and all of it hammered away at the same message: blindness is respectable. The NFB says: The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exist. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.
I found that message to be incredibly powerful. But the real power of the NFB isn’t the words, it’s the people. When you come to a convention, you have the opportunity to see what blind people can do, and that can give you hope and high expectations for what your child can do and become. This conference is about your child’s future. We always need to be thinking about what we want for our children when they grow up and, even more important, what their dreams are. “When I Grow Up” is about what’s possible and how to get there.
Throughout this week we’re going to hear from successful, independent blind youth and adults who can show us how to reach our goals for our kids. I hope you take full advantage of all that’s available to you at convention. Listen. Ask questions. Go to sessions. And, most important, meet people. You are with a giant family of people who want your child to succeed. I know that you’ll leave this convention more inspired and better able to handle what lies ahead.
If I can leave you with one thing, I hope it’s this: what you believe about blindness affects everything. You can be a loving parent. You can be a skilled teacher. You can sincerely love blind children and want them to succeed. But, if you don’t truly believe in your heart of hearts that it’s okay to be blind, your child won’t either. The NFB’s philosophy is what I want my daughter to learn and live. The NFB helps me stay focused on my goal to raise Lindsay to be a happy, healthy, independent, successful adult. I want for my child what all parents want for their children. My desires and expectations aren’t different or lower because she’s blind. Yours shouldn’t be either.