by Laura Weber
Barbara Cheadle: Thank you, Angela. Our next speaker is the president of our new POBC in Texas, Laura Weber. Laura’s path to the NFB was influenced by none other than Angela Wolf.
So the NOPBC is twenty-five years old? Big deal. Do you know how many times I’ve celebrated my twenty-fifth birthday? I haven’t been involved with the NOPBC for twenty-five years, or even ten years. My daughter Lindsay is only five years old.
My family’s story isn’t unusual. When I took my daughter to her two-month well-baby checkup, I mentioned to her pediatrician that her eyes moved around a lot and that she wasn’t visually tracking things yet. He referred us to a pediatric ophthalmologist, and after another month, many tests, and a second opinion, we found out that Lindsay was blind due to Leber’s congenital amaurosis. 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 parent groups and information. I was devastated and scared, but I was determined. I eventually met some local parents who were involved in NAPVI. As most of you know, NAPVI is the other parents group--the National Association of Parents of Children with Visual Impairments. Together we re-formed HAPVI, a Houston-area chapter of NAPVI that had been inactive for several years. I was elected president, and I served for two years.
So why am I here today to tell parents to join the NFB? How did I go from being the president of HAPVI to being the president of Texas Parents of Blind Children and, as of this past Tuesday, the new secretary of the National Organization of Parents of Blind Children? What made me cross over to the dark side?
First is this: I came to realize that it’s not about me. A parents’ group doesn’t have to be affiliated with an adult organization of the blind to give you information. You can learn about special ed law. You can meet other parents and exchange stories. You can hear a lot about what the experts in the blindness field–the experts being sighted professionals, of course–have to say about teaching blind children. But what’s in it for my daughter? Yes, having an educated parent is crucial. But what kind of education can you get about blindness from a group of sighted parents who’ve aligned themselves with professional organizations of sighted educators and proudly advertise the fact that they’re not part of an organization of blind adults?
This is about my daughter. Lindsay is a blind child. She will grow up to be a blind adult. I want to be part of a group that can prepare her for that. Belonging to the organization of the blind is essential. We’re talking about my daughter’s future. She needs blind role models. She needs programs like Braille Readers Are Leaders, Youth Slam, Slate Pals, Buddy Camps, and mentoring programs. She needs the NFB.
The other reason I joined the NFB is 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.
I have to let you in on a little secret. Some people think the NFB is made up of radicals. (You probably didn’t know that, right?) When I first started talking to Angela Wolf and others about forming a parents of blind children chapter in Texas, I asked her about the NFB’s reputation. Is the NFB really radical? You know what she said? She said, “Well, if believing in blind people being independent and capable is radical, then yes, we’re a bunch of radicals.”
That’s the kind of radical thinking I want my daughter to have. 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, and successful adult. In short, 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.
Lindsay will turn six next week. She’s using a cane and learning to read Braille. She’s smart and beautiful and funny and is, without a doubt, the happiest kid I’ve ever met. It feels good and right to be raising her in the NFB. Together we’ll teach her that it’s respectable to be blind.
As Barbara mentioned in my introduction, I do have a day job. I'm a biomedical engineer, and I work at NASA’s Johnson Space Center in Houston. I’ve had some amazing opportunities. I've worked in the Mission Control Center during space shuttle flights; trained astronauts and cosmonauts; experienced weightlessness on the KC-135 zero-G airplane (the "vomit comet"); been to space shuttle launches and landings; trained a crew on an actual space shuttle middeck; and worked on medical and experimental hardware that has flown on the space shuttle, the Russian Mir Space Station, and the International Space Station. I’m grateful for these experiences, but the truth is, it’s just a job. It pays the rent. I can assure you wholeheartedly that my job as a mom, an advocate, and a volunteer is much harder than my day job--and more exciting and fulfilling! Who says that being a parent isn’t rocket science? Thank you.