Future Reflections Winter 2012
Building A Parents' Chapter In Alaska
by Pamela Gebert
From the Editor: Building a new chapter of the NOPBC presents many challenges, especially in a state with a widely scattered rural population. Yet the experience of Pamela Gebert of Alaska shows that it can be done. This article is based on Pamela's presentation at the NOPBC board meeting during the 2011 NFB convention in Orlando, Florida.
When my daughter, Julia, was three months old, she was diagnosed with a severe condition that left her without sight. Only two weeks after her diagnosis, we had the good fortune to start receiving services for infants and toddlers who are blind. Our teacher was wonderful. She brought all kinds of adaptive toys that encouraged Julia to roll and ultimately to crawl and to walk. We had the Little Room, designed by Dr. Lilli Nielsen, Denmark's pioneering educator of blind children. Our house was filled with stuff, all for the benefit of our child.
Even when Julia was a tiny infant, her teacher brought Braille to our house. We had calendars and catalogues and books that none of us could read, but the teacher asked us to place them throughout our home. We had adhesive labels in the kitchen, on light switches--Braille was everywhere! It all makes sense to us now. We take for granted that our sighted children have plenty of early exposure to the written word. They see print on cereal boxes and magazines, and as we drive through town they see signs. We have to bring the same early experience of literacy to our blind children.
Outside our back door is a beautiful mountain range, the Chugach Range, and some of those peaks are climbable. One day I asked our teacher how we were ever going to climb Flat Top with our daughter. When I grew up that was something I did with my family. We were big hikers and skiers. Our teacher told us about the young blind man who had just climbed Mount Everest. The next time she came, she brought articles to show us. She also started to bring me little books with titles such as What Color Is the Sun? and The World Under My Fingers. I read them and enjoyed them very much! I remember lying in bed sometimes just thinking about the possibilities; those books gave me so much hope!
From the beginning I was reaching out for information, looking at resources on the Internet and making phone calls. I called Florida and southern California, Michigan and New York, contacting organizations and asking for literature. The mailbox started filling up. Ultimately I found the NFB. I spoke with a very kind, helpful lady who told me they did not have a parents' chapter in Alaska. She suggested I think about starting one.
At that time I had a two-year-old son and a very sick infant who was on chemotherapy. I thought, I'm reaching out for help! I have nothing to offer! But that conversation planted a seed, and over the years I started to think that it really would be nice to meet other families of blind children. Andre, our teacher of the visually impaired, helped make that happen. When we had questions about Braille, she and another teacher of the blind held a weekend Braille class for our family. The grandparents, my sister, my husband and I all attended. Andre invited some other families with children who were a bit older than Julia, and they gave us a demonstration. Their encouragement gave us so much hope and peace! Julia was still in an infant carrier, but we wanted to learn everything we could and find out what we could expect.
You all remember the days before email and text messaging. Think back to how enjoyable it was to open the mailbox and find a handwritten letter from a friend. That was the first one you'd open. The bills would go to the side, and you'd open that letter. That's how I felt about that blue glossy magazine, Future Reflections. I'd see it in the mailbox and set it aside. Like the Kernel Books, the articles in the magazine gave me hope and peace. It actually took me a while to realize that the books and the magazine came from the same organization! It was the organization that spoke to me.
The spring issue of Future Reflections always included information about the NFB national convention, and I'd think, some day we're going to get there. The year convention was held in Louisville, we actually got serious. I made phone calls inquiring about childcare, but Julia was still very sick and we just weren't ready to go.
Last year in mid June, when Julia was ten years old, I got a call from our former teacher of infants and toddlers. She wanted to let me know that there had been some changes in the state of Alaska. The services for visually impaired infants and toddlers would be no more. The state had cut funding; the grant would no longer be continued. Blind children throughout the state of Alaska would not receive help until they reached preschool.
I remember that when we hung up I was sitting in a parking lot, thinking how terrible this news was. As I drove home I thought about all the benefits our family had received, how much it meant to us. Our teacher had given us the message of high expectations. She taught us that Julia could do whatever the rest of us were doing. I felt very sad for all of the families in Alaska who would not have the chance to hear that message.
At that point my child was in school and doing very well. She had started preschool ready to learn. I was stressed out when she was transitioning to preschool. A few weeks before her third birthday I was lying next to her and she reached down and touched my goosebumpy leg. "Mama, what are all these letters doing here?" she asked me. I thought, what am I thinking? We're going to be okay! Our little girl equated bumps with letters, just as our son, who is two years older, knew that letters make words.
My sadness for those other families began shifting to anger. I thought about all the kids who weren't going to be ready for school and might never catch up because they haven't had that important early exposure to literacy.
I went straight to work. I started making phone calls and plane reservations. Two weeks later, Julia and I were in Dallas at the 2010 NFB convention. I knew I could go to the NFB for support--I'd known that for years. I hadn't pre-registered for the NOPBC conference, but I crashed a few meetings. I talked to Carol Castellano and asked a lot of questions. When I got home I was fired up and inspired.
The week after we returned from convention, I started writing letters. I created a petition and got five pages of signatures from parents, teachers, and Lions Club members. I went to Camp Abilities, Alaska's camp for blind children. I forwarded the petition to legislators, representatives in Congress, and our governor.
It's been a long fight, with some passionate, distressing meetings, but we've made some changes. Things are moving along. They're not quite what I'd like them to be, but we're heading in the right direction.
If you've ever been a long-distance runner, you know how sometimes you hit a plateau, and you don't know how you're going to continue. But you persevere, and finally you get to the end. We've hit the plateau a couple of times, but we're back on track now.
Despite those passionate meetings, the state invited me to some meetings with rural educators early last summer to talk about expectations and the things that blind kids need. I was very pleased that they were open to hearing what parents of blind children have to say. We're making progress.
In February I was invited to the NFB's Parent Leadership Program (PLP). The program was a whirlwind of information! I am so appreciative to Barbara Cheadle, Laura Bostick, and Carol Castellano for all the information they gave us. I took home piles of fliers and made templates for Alaska. I was determined to start an NOPBC chapter in my state. I found a room and rounded up some blind young adults to handle childcare. I sent out fliers to as many people as I could reach and asked them to forward the information to others. I asked people to RSVP, but I only got a handful of responses, even though I sent out the information a number of times.
On the night of the meeting, I told our state NFB president that no matter how many people came, we'd call it a quorum. We were going to make this happen. Soon after that people started to stream in. When the meeting began at seven o'clock, we had thirty-nine people in attendance. That very evening we established a parents' chapter. We talked about a constitution, we discussed our mission, and we created work groups. Advocacy was our big priority. There needed to be more than just one crazy mom who kept showing up on people's doorsteps! I have more people behind me now, and it's wonderful.
One of our goals is to make sure that Alaska is accessible to our blind kids. Alaskans tend to be very active, outdoor people. We planned a family picnic for July. The Lions generously provided pizza, salad, and desserts. The Camp Abilities campers demonstrated beep baseball and other sports.
Alaska is a huge state. If you transpose the map of Alaska onto a map of the rest of the US, it would sprawl from North Dakota and Michigan all the way to Florida. The next biggest city is an eight-hour drive from Anchorage, where we live. Many of our communities are inaccessible except by boat or plane, so it's tough to get people together--that's an understatement!
Our new NOPBC chapter is very concerned about the blind children who live in rural areas. In September a group of families set out with a traveling road show. We camped in a town five hours away and invited the families from that area. The kids got to know each other and the parents learned about what we hoped to do. Next summer we're going to do the same thing in Fairbanks, the city eight hours north of us. We'll bring our campers and tents, and we'll get together that way.
In February we plan to hold our first annual Alaska Parents of Blind Children convention. We'll do it in conjunction with the Braille Challenge. It will be a weekend of parent workshops and activities for the kids. Then we'll caravan down to a little town called Burgwood and camp out there. We'll have a big slumber party, and the kids are going to do some downhill skiing. We have a wonderful skiing program for blind kids called Challenge Alaska.
Our main goal in setting up a parents' chapter is for these "bush" Alaska families to believe in their kids and for the kids to feel good about themselves. Whatever their sighted peers are doing--whether it's hunting or gathering berries or fishing--our blind kids are fully capable of doing those things, too. They can be fully literate, they can graduate and go on for further schooling--they can be so many, many things.
Advocacy remains a driving purpose of our chapter. I'm tapping a lot of people around the country who have gone through tribulations with their state governments. I'm learning what has worked from those who have gained years of experience before me. It is wonderful to know that I'm not alone!