Future Reflections Convention Report 2010
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by MarChé Daughtry, Zina Lewis, and Mark Riccobono
Introduction by NOBPC President Laura Weber: The programs of the Jernigan Institute are changing kids' lives and their beliefs about what they can do in the future. Like Cary Supalo, they can travel the world and look smart! In this panel we're going to hear from a student who participated in one of these programs, from her mother, and from the executive director. I present to you MarChé Daughtry, the student; her mother, Zina Lewis; and the executive director of the Jernigan Institute, Mark Riccobono.
MarChé Daughtry: Hi, people! I'm MarChé, and this is my mom. I was in the LAW Program this year, which stands for Leadership at Washington. We went to the Jernigan Institute on the fifteenth of April. Mom and I took the train, which I was very excited about because I never took the train before.
The first day we got into our rooms and met a lot of new people. The next day we learned about the history of the National Federation of the Blind. We learned about the founders and the important things they did in their lives and how some of them went to Congress.
Then we had a little debate. There were about twenty-five of us kids and we debated four issues, pro and con. The issue for my team was "Should blind people get extra time for taking tests?" We were the team that said, "No, they should not." We had five minutes to say why they should not, and our team won!
The next day, which was Sunday, was my favorite. We went out sightseeing. We went to the Lincoln Memorial and the World War II Memorial, all kinds of memorials. At the World War II Memorial they actually have tactile pictures. You can feel the pictures of the soldiers and see what they're wearing and the things they're carrying and even their tents. I met a man there who was really in World War II. He actually got hurt right before D-Day, so he wasn't in the D-Day landing.
Then we went to Arlington National Cemetery. Let me tell you, it was the most painful walk I have ever had, all up hills! Yes, I was complaining, but no, we could not take a break! [Laughter.]
Zina Lewis: We were there for the changing of the guards at the Tomb of the Unknown Soldier. It was really quite nice to see the sychronization of the soldiers. We also saw a memorial at the Pentagon for 9/11. They have benches arranged so that some of them face the Pentagon and some of them face away from it. The benches facing the Pentagon represent the airplanes flying into it, and the benches facing outward represent the people who were inside, with their names.
MarChé: Monday we went to the Capitol, and we had to dress nice. I'm okay with dressing nice. I liked going to the Capitol because I love history, and there's so much history all around you when you're there!
Zina: The first thing we did when we got to the Capitol was--
MarChé: We stood in line! [Laughter.]
Zina: Then we went in to see the House of Representatives. We were there for about an hour. The guide explained where the president comes in, he explained the aisle and the side for the Republicans and the side for the Democrats--he just explained how things went. Then one of the pages came in and talked to the children about being a page. She encouraged the blind students to put in their applications. Her name is Stacy Cervenka and she's blind.
MarChé: Another thing I liked was that they had a tactile map of Washington with the streets labeled in Braille. We didn't get much chance to look at it before we had to move on.
Zina: The Presidential Hall had a lot of statues and paintings. Stacy went over to the paintings on the wall and explained a little bit about each one. We went on to a gallery where you can whisper from across the room and people can hear you. She showed us; she went across the room and whispered and we could hear her, and that was pretty neat. Then we rode a subway to where we ate lunch. And that's where things went downhill.
MarChé: But first after lunch we went to the White House! And we went to a big conference room where the president talks to people.
Zina: Kareem Dale, the President's Commissioner on People with Disabilities, talked to the kids about things going on in the White House. We didn't get to meet the president, but he was there. But, well, MarChé wasn't feeling well, and on the way back--
MarChé: Mom! This is my part! I'm the one that threw up! [Laughter.] All over the place! It was awesome!
Zina: And we were stuck in rush-hour traffic. All the way back to Baltimore!
MarChé: Then the next day we went to the House offices and talked about our bills. One bill was about quiet cars and one was about getting speech or Braille on those flat things--you know--touch screens. I went to see my representative. He wasn't there, so I talked to one of his assistants. He had actually signed off on the quiet cars bill, so I tried to convince him to sign the technology bill. I think he decided to sign on, but I'm not really sure.
Zina: We were with a group of four kids from different parts of the country, so we went to see their representatives, too. The appointments were pretty spread out, so we had quite a long stretch of time in between where we just sat around in the cafeteria.
MarChé: We went to see one representative who had signed onto all our bills, and we went to say thank you. One of the students I was with, her name was Hannah. She's from somewhere out west. And her representative I couldn't stand! We tried to talk to her assistant about quiet cars and the touch screen bill, but she wasn't interested at all.
Zina: She just didn't want to sign onto the bills, and she didn't want to hear what the children had to say.
MarChé: We weren't getting anywhere. We were just going around in circles. But then the boy named Ross said something about children, sighted children, running out and getting hit by quiet cars. Then all of a sudden it was, "Oh, we can't have children getting hurt!" It was like blind people don't matter, but sighted children matter! And we said that if they have audio on the touch screens, that would help sighted people who can't read very well. Maybe that started to change her mind.
Mark Riccobono: That's a tough act to follow. I appreciate the opportunity to be here today, and I really appreciate that all of you are here. The fact that you are here is immensely important for you, for your children, and for the children you teach. Your being here is one of the elements that will make a tremendous difference. Making a difference is the essence of our Jernigan Institute--it's not mine, it's all of ours. It's our institute, and it will do all of the things we want it to do.
For about a decade I have been working on the education of blind children. I hesitate to say that because I don't know that things are any better than they were ten years ago. I'm a blind person. I grew up as a blind person, although I didn't know it. Nobody ever said I was blind, though I was legally blind at least. For the past three years I've been a parent, although I wasn't the parent of a blind child. I've been a parent, so I've had all those experiences.
My blindness is caused by a condition called aniridia. Aniridia can lead to many things. By itself it doesn't necessarily cause vision loss, but it can lead to glaucoma. Glaucoma caused much of my vision loss.
Seven weeks ago my wife, Melissa, who is also blind, gave birth to a daughter. [Applause.] Oriana has aniridia. It's possible that I could now be the parent of a blind child. I just don't know. The possibility of blindness for Oriana doesn't scare me, because I know what to do about that. I know the National Federation of the Blind will be there for us. The thing that scares me is the education system that my daughter might have to go through. We're the folks who are going to change that--for your children and for my child--for all of our children! [Applause.]
My mom didn't know I was blind. She knew I had vision loss. Professionals told her this and that, but no one ever told her about the National Organization of Parents of Blind Children. I grew up during the early days of the NOPBC. The NOPBC was growing, and Future Reflections was growing, but my mom knew nothing about those resources. She has a lot of regrets about the things she didn't know. She has come to work with the National Federation of the Blind and our Wisconsin affiliate. She's been involved with parents there, trying to give them some of the things she wished she had had.
My mother has been talking to some of the Wisconsin parents about Oriana. One mother told her friends, "Karen has some good news and some bad news!" The good news, of course, was that she has a new granddaughter. The bad news this woman referred to was that the granddaughter might have some degree of vision loss. My mom called me up and said, "I don't feel that this is bad news. First of all, who better to raise her than two blind parents? This is not bad news. Blindness is not a bad thing!" But for so long she had been given the impression that blindness is a limiting factor that she almost felt bad about pushing back against what people were saying. I said, "Don't feel bad about it! Push back as hard as you can!" [Applause.]
When we had our first child, Austin, moments after his birth the doctor said to us, "You know, I looked all around, but I didn't find a manual in there." He meant that we're not expected to know all of the things we need to know as parents. It's a learning process. That's true for any parent, whether your child is blind or sighted.
In the National Federation of the Blind Jernigan Institute we're trying to change the experience of education for blind children. The best way we know to do that is to do it ourselves. Cary Supalo gave a very good description of one important element, our work in science. It's not that we think every blind child is going to become a scientist. It's not that we believe engineering is suddenly the new chair-caning! But we want blind kids to know they have the opportunity to become astronomers or engineers. If that's not what they want to do, if that's not where their passions lie, they will still do something more than what they thought they could do before. That's the essence of what we're working toward.
Cary gave a description of how we're trying to catalog some of the great things that are happening out there. Where great ideas have been generated in the past there has been no way to preserve them and build upon them. That's what we're doing with our Science Initiative. We're doing it in many other areas as well. I'll talk about a couple of them before I close.
One area we're working on is Braille. We know that Braille literacy is important and we have a lot of work to do there. For decades we've been running the Braille Readers Are Leaders Contest in partnership with the National Organization of Parents of Blind Children. This year we had record participation. [Applause.] It shows that the effort that ramped up last year is making a difference. We also have generated a summer program called Braille Enrichment for Literacy and Learning, the BELL Program. We have packaged that curriculum. This summer we're offering that program to provide Braille instruction to kids who typically aren't getting Braille, kids who are overlooked. Most of them have some vision. In some cases to say that these kids have vision is kind of a joke! We're providing Braille for them. If the schools won't teach them, we'll teach them ourselves. We're doing that in Georgia, Maryland, Texas, Utah, and Virginia. That curriculum is available to anyone in the National Federation of the Blind who wishes to put together the resources and find the really great teachers who want to get Braille to these kids. We can do it ourselves and will continue to expand that effort. The attitude has been that Braille is a last resort. Unless we insist that there is a different path, we won't make progress.
One of the richest assets available to us is the network of blind people in the NFB. You don't have to know everything. When I have any question related to blindness, I know I'm only two, maybe three people away from finding the answer. We want to build upon mentoring opportunities.
Our goal in the National Federation of the Blind Jernigan Institute is to make sure that the next generation does not have the same regrets that we have. Many of us regret that we didn't meet the National Federation of the Blind earlier in our lives. We're going to eliminate that regret for the current generation.
There are so many elements in the education of blind children that need to be worked on. The work starts with our building a network, discussing our hopes and dreams, and thinking about how we can get there together. That's what we do in the Jernigan Institute. Your voice is important. Your participation in the work we do is important, not just for your child but for all blind children. We believe that they are all our children. Their dreams are our hope for the future. Thank you.
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