A Magazine for Parents and Teachers of Blind Children published by
the American Action Fund for Blind Children and Adults in partnership
with the National Organization of Parents of Blind Children.
Volume 30 Number 4 Convention Report 2011
Deborah Kent Stein, Editor
Copyright © 2011 American Action Fund for Blind Children and Adults
For more information
about blindness and children contact:
National Organization of Parents of Blind Children
200 East Wells Street at Jernigan Place, Baltimore, MD 21230 • (410) 659-9314
www.nfb.org/nopbc • [email protected] • [email protected]
Volume 30 Number 4 Convention Report 2011
A Letter from the Editor
by Deborah Kent Stein
When I Grow Up
by Laura Bostick
by Roman Sollano and Shafeka Hashash
Looking to the Future
by Frederic Schroeder, PhD
Get a Life! A Social Life, That Is
by Mary Fernandez
Discovering and Honoring the Voices of Our Children: From Control to Support
in Five Easy Lessons
by Jerry G. Petroff, PhD
Not Just Blind: Planning for the Future of a Blind Child
with Additional Disabilities
by Carol Akers
The NFB Math Survey:
by Al Maneki, PhD
Getting an Education for Blind Children and Adults: How to Survive with Proper
Expectations and Accessibility
by Anil Lewis
Access to Technology: The Bottom Line
by Alexa Posny
The Only Option: Accessibility
from the Ground Up
by Gaeir Dietrich
EVENTS AND HIGHLIGHTS
The Cane Walk: Exploration and Discovery
by Jeff Altman, MA, NOMCT, CVRCB
The Braille Book Fair/Flea Market
by Barbara Cheadle
Art Is for Everyone
by Ann Cunningham
by Deborah Kent Stein
Our Convention Journey
by Penny Duffy
One among Thousands
by Doreen Franklin
by Pamela Gebert
The 2011 Educator of Blind Children Award:
Dreamers and Risk Takers Make the Future!
by Dr. Dean O. Stenehjem
The 2011 Jacob Bolotin Awards
by Jim Gashel
Meet the 2011 National Federation
of the Blind Scholarship Class
by Gary Wunder
ODDS AND ENDS
Future Reflections is a magazine for parents and teachers of blind children. It is published quarterly by the American Action Fund for Blind Children and Adults in partnership with the National Organization of Parents of Blind Children. Future Reflections is available free of charge to subscriber addresses in the U.S. in regular print and audio formats and via email, or it can be read online on the NFB website. Canadian subscriptions are $35.00 per year, and other foreign subscriptions are $75.00 U.S. per year. Checks should be made payable to the National Federation of the Blind and sent to the NFB, Attention Future Reflections, 200 East Wells Street at Jernigan Place, Baltimore, MD 21230.
For an email subscription to Future Reflections, visit <www.nfbcal.org/listserv-signup.html> and follow the instructions.
To subscribe to Future Reflections in print or audio format, send an email to [email protected] Put "Subscribe to FR" in the subject line and include your preferred medium in the body. Please include your address, whether you are the parent of a blind child, a teacher, or other subscriber. If you are a parent, include your child's name and birth date.
Are you the parent of a blind or visually impaired child? Don’t know where to turn?
Founded in 1983, the National Organization of Parents of Blind Children (NOPBC) is a membership organization of parents, educators, and friends of blind children reaching out to give each other vital support, encouragement, and information. We have thousands of members in all 50 states plus Washington, D.C., and Puerto Rico.
The NOPBC offers hope, encouragement, information, and resources for parents of blind or visually impaired children. NOPBC provides emotional support and a network of other families dealing with the same challenges you are facing. We also provide information, training, and resources to empower you to take an active role in guiding your child’s development and education. We can provide information on your child’s rights and on the laws and legislative issues that will enable you and your child to become strong and effective advocates.
Have you ever wondered what your blind or visually impaired child will be capable of when he or she grows up? The answer to that question is that blindness/visual impairment does not have to stop your child from doing anything he or she wants to do. We can connect you with other families and blind adults who can serve as positive mentors and role models. They can teach you the attitudes and techniques that will enable your child to become independent and to succeed in life.
What is different about the NOPBC?
Our status as a division of the National Federation of the Blind (NFB), the largest and most influential organization of blind people in the world, provides many benefits. Our members are well informed about the societal, legislative, and technological issues that affect blind people. We also enjoy the resources, support, and expertise of fifty thousand blind people who can serve as mentors and role models for us and our children. Finally, as our children grow up, they have the Federation to belong to.
No other organization for parents of blind/visually impaired children offers more programs, activities, and training to families, children, and youth. One of our most exciting activities is our annual conference. Every year since it was established, the NOPBC has conducted an annual conference for parents and teachers of blind children as part of the national convention of the NFB. The program has grown to include five exciting days of workshops, training sessions, activities for all family members, including sighted siblings, and countless opportunities to meet blind adults and other families and children from around the country.
What is the mission of the NOPBC?
The purpose of the NOPBC is to:
• create a climate of opportunity for blind children in home and society.
• provide information and support to parents of blind children.
• facilitate the sharing of experience and concerns among parents of blind children.
• develop and expand resources available to parents and their children.
• help parents of blind children gain understanding and perspective through partnership and contact with blind adults.
• function as an integral part of the National Federation of the Blind in its ongoing effort to achieve equality and opportunity for all blind persons.
Most states have an NOPBC affiliate chapter. You can find your state chapter at <www.nopbc.org>. If your state does not have a chapter and you would like to start one, please contact us. We may be able to offer training and other assistance to start a state NOPBC chapter.
What are the programs, activities, publications, and resources of the NOPBC?
• National and State Parent Seminars and Conferences
• Future Reflections Magazine
• NOPBC Web site
• Books and Videos
• Blindkid & Other Listservs
• Early Childhood Conferences
• Pop-Up IEP Web site
• Braille Readers Are Leaders Contest
• Slate Pals Pen Pal Program
• AAF Free Braille Books Program
• Share Braille Book Exchange
• Writing Contests
• Junior Science Academy
• Youth Slam High School Science Academy
• National Center for Blind Youth in Science Web site
• NFB-NEWSLINE® Newspaper Service
• Where the Blind Work Web site
• Free White Cane Program
• Blindness 411 Facebook Group for Teens
• NFB-LINK Mentoring Program
• Scholarship Program
• Straight Talk about Blindness Video Series
• Parent Leadership Program (PLP)
by Deborah Kent Stein
The work of the National Federation of the Blind goes on year round, but our annual convention is the capstone of our effort and achievements. Convention brings together thousands of blind people, along with our friends and families, for a week of learning, strategizing, celebration, and fun. In the atmosphere of convention, no one is truly a stranger. People strike up conversations in restaurants, at the pool, in the exhibit hall, and even as they wait for the elevators. They share tips on technology and cane travel as well as good places to eat and interesting attractions to visit.
The seventy-first convention of the National Federation of the Blind met from July 3 through July 8, 2011, at the Rosen Shingle Creek Hotel in Orlando, Florida. Convention began with "When I Grow Up," a day-long conference for parents of blind children. While the adults listened to presentations and took part in animated discussions, kids had the chance to learn tricks and jokes from a professional clown in NFB Child Care. A variety of activities for kids and teens were available throughout the convention.
During convention dozens of NFB groups, committees, and divisions held their annual meetings. Some of these meetings focused on the concerns of blind people in a particular field or profession--blind lawyers, blind educators, blind musicians, blind people in health and human services, blind entrepreneurs, and blind scientists and engineers. There were sessions for blind seniors, blind students, blind parents, blind craftspeople, blind equestrians, and blind people in communities of faith. Anyone was welcome to attend any session, to ask questions, and to offer ideas. It was all about networking!
The general sessions, held on July 6, 7, and 8, included presentations on the education of and technology for blind children, the future of Braille and audiobooks, and challenges and opportunities for the blind community in the years ahead. President Marc Maurer reported on Federation activities during the past year, and the assembled members voted on resolutions that determine the organization's policies for the years ahead.
Convention closed on a high note with the annual Convention Banquet on the evening of July 8. Thirty outstanding blind students received NFB scholarships, and President Maurer delivered a stirring banquet address.
If you attended the 2011 national convention, the following pages may bring back fond memories and spark your anticipation of the convention to come. If you have not yet had the chance to attend an NFB convention, perhaps this sampling of conference presentations, accounts of convention events, and personal reflections will convince you to join us in Dallas for Convention 2012. We look forward to meeting you!
by Laura Bostick
Reprinted from the Braille Monitor, October 2011
From the Editor: At the conference of the National Organization of Parents of Blind Children during the 2011 NFB convention, NOPBC President Laura Bostick (formerly Laura Weber) gave a short introductory speech. Her comments capture the essence of why the NFB is important to the future of today's blind children. In a few words she conveys our responsibility to blind young people and their families and sums up the challenges we face in making the world what we want it to be for all of us.
Good morning, and welcome to Orlando. My name is Laura Bostick, 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 parents' 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. 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 believe it 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 for your children shouldn't be either.
by Roman Sollano and Shafeka Hashash
Introduction by Laura Bostick: Next we're going to have our student panel. Our first speaker is Roman Sollano from Willow Springs, Missouri. He's going into the eighth grade. He participates in band, cross country, and track. He enjoys sports, reading science fiction, watching documentaries on science and prehistoric times, and playing practical jokes. He hates people thinking he can't do things, being talked down to, and poison ivy. I give you Roman Sollano.
Roman Sollano: I am Roman Sollano. I am fourteen years old. I live in the country. My family has chickens, goats, and horses. We garden and raise most of our own food. I go to a small school in Willow Springs, Missouri. It is easy to know most of the people there. I like spending time with my friends and girlfriend. I like sports and school activities like band and dances. And by the way, I'm illegally blind.
That's right, illegally blind. That's because I get in trouble playing all my jokes.
When I grow up I don't want to be a couch potato. I want to be active and to have fun with my friends. I don't just want to listen to books. I want to read books and maybe make a few of my own. Joke books!
I want to go to college and get an education instead of staying with my nosy parents. [Laughter] When I grow up I want to be a happy member of society. I want to have a job I like and a home I like and enough money for an airplane. [Laughter] I want to be able to find my own way, check out my own books, buy my own groceries, and cook my own food. I want to learn all I can from school and the NFB so that when I grow up I can be independent.
I want to learn how to garden, take care of a few animals, and maybe do some mechanical work. I would like a job in the science field--maybe biology, maybe chemistry, maybe even inventing. I have always been fascinated by science, and I love to learn about it. I first got interested when I was three years old and watched Twenty Thousand Leagues under the Sea. It is still my favorite movie.
When I grow up I don't want to be boring or easy to figure out. My favorite character from Tolkien's Lord of the Rings is Golem. I understand how he feels. He has a bad side that everybody sees, and he has a good side that no one realizes. It is a little like being blind. Everyone sees you as just being a blind person. People don't take the time to get to know you. I want to be respected and yet do my own thing.
When I grow up I want to have a bigger part in the NFB. I want to help other children with sight problems adjust to life just like the NFB has helped me. I would recommend NFB programs like Junior Science Academy in Baltimore, Maryland, where I got to ride a rollercoaster for the first time. I also learned that it is okay to be blind; you just have to learn certain techniques so that when you go out in public you don't look as though you have no idea what you're doing. Like my mom--when she was blindfolded she ran into a wall and knocked a picture down.
Then there was Mission Believe [a conference in Missouri], where I learned that blind people can do anything that sighted people can do. I even got to ride a zipline and a giant swing. I think it would have been easier if I had been completely blind. I'm going to go to the Colorado Center for the Blind so I can learn better life skills.
When I grow up I want to be able to throw parties on weekends and holidays. Having fun is very important to me. So is being with friends and family, and that includes my NFB family.
To sum it all up, when I grow up I want to be me, myself, just the way I like to be. After all, isn't that what anybody wants, sighted or blind?
Laura Bostick: Roman and I have a lot in common. I also don't want to be boring, I don't like poison ivy, and I'd like to have enough money to buy an airplane.
Our next panelist is Shafeka Hashash. She's from New Milford, New Jersey, and she's going to attend NYU in the fall. She is a member of the NFB Scholarship Class of 2011. [Applause] She's been a mock trial captain and a Model United Nations chair. She is currently the vice president of the New Jersey Association of Blind Students. Her interests include politics, human rights, law, travel, and meeting new people.
Shafeka Hashash: I'm only eighteen, so I still have plenty of growing to do. I'd like to take this time to talk about some things I went through growing up and what I expect from myself in the future. Recently I finished an internship with a New Jersey congressman, and I'm very excited about attending NYU in the fall. In my future I plan to obtain degrees in political science and international relations. At the moment I think I want to go to law school. My ultimate goal is to work for the United Nations.
When I grow up I want three things. First, I want to be absolutely independent. At the moment I have what I like to call teenage independence. My main source of income is my dad. I know how to cook, but I'm not the family chef. Second, I always want to be confident in myself. Confidence is crucial, especially for a student. Finally, I want to change things rather than avoid them. I never want to avoid something because it's an obstacle. I would rather change it and be the first to do so.
Growing up I went through a lot of phases that parents may notice in their kids. At the moment the two big issues I see for independence are Braille and cane travel. I think every kid goes through a phase of thinking, I will never use the cane! This is absolutely awful! You can't force me to go out in public with this thing!
My parents kept the cane in my hand, not necessarily forcing me to use it but just keeping it with me when we went out. That got me to be more comfortable with it. I'd walk into people at the mall who'd get mad because they thought I was a rude, clumsy little girl. One day I ran into one of those barriers they put in the middle of the entrance to a store, and I got a huge bump on my head. We had to go put ice on it. There was an ice cream place nearby, so I sat in the middle of the mall with a box of ice cream on my head. The lesson in that one: Use your cane!
The other thing is Braille. I am the biggest Braille advocate out there. For me print wasn't an option. But even for kids with some sight, there are no negatives to learning Braille. Some people say, "Braille is unnecessary. It makes you look different." Well, if you're blind you're always going to stand out anyway. But that's a good thing--I don't know why it's perceived as a bad thing. There's a tremendous difference between listening to something and reading it yourself. In college I'm going to have to do a lot of listening, but all my notetaking will be in Braille. Anything you put onto a computer can be put onto a Braille machine. Reading it yourself is much better than having it read to you.
A lot of blind kids deal with blindisms. My blindism was that I rocked. A lot of kids have rocking or light-gazing or other mannerisms. My parents were very, very strict. Maybe when a child is six or seven rocking is not a big deal. But when that child is twenty-five and interviewing for a job, it doesn't matter if he graduated from Harvard, he's not going to get hired if he's rocking back and forth! In high school it's hard enough just being blind. You have to go the extra mile to make friends. If you're rocking or constantly staring into the sky, kids aren't going to approach you.
It's a bit of a cliché, but you have to believe in yourself. Sometimes my parents think I have too much confidence! Maybe that's true sometimes, but I think too much is better than too little. Confidence allows you to be social. Braille and independent travel are important, but if you can't be social you're going to be very unhappy.
You can't be afraid to make changes. This past summer I went to Syria with a program called Open Hand Initiative. There were ten students from the United States and ten from Syria. The purpose was to discuss the rights of persons with disabilities in the UN convention in Syria. We worked with the president and the first lady, and it was a big, big step for Syria. Syria is a developing country in the Middle East. They don't have a lot, but they do have some things. For instance, some blind kids there had canes, but they chose not to use them. They said that the public wasn't aware; people didn't understand. Well, people are never going to understand if the kids who are supposed to be using canes are sitting in their rooms, not going anywhere! I met a girl my age, eighteen, who never separated from her mom. When we went out to restaurants or to visit landmarks, her mom was always with her. You could tell that her mom still dressed her and took care of her. It's a misunderstanding that it's better to be taken care of than to go out and change things.
When I attend NYU I'm going to have to use the New York subway system. My mom is not thrilled with that, of course. I can't say I'm thrilled myself, so we're getting over it together. Actually, I love the subway system. It's a bit nerve-wracking to use it by yourself at first. Some people think that as a blind person you should use what's easiest--a taxi or a Dial-a-Ride service. Well, New York taxis are very expensive. The subway costs $2.25 to take you anywhere in the city. I never want to avoid something because it seems scary at first. I would rather break down that barrier.
My parents have been through everything with me. They went through the cane fits--once I purposely broke a cane because I didn't want to use it! My parents will be with me through college as a support, and that's a big thing. I love them for it! I know I will be a successful adult. I'll always have the support of my family, but I will do things on my own.
by Frederic Schroeder, PhD
Introduction by NOPBC President Laura Bostick (formerly Laura Weber): Dr. Fred Schroeder is first vice president of the National Federation of the Blind. He is a research professor and served as commissioner of the Rehabilitation Services Administration (RSA). Prior to entering the field of vocational rehabilitation he worked as a special education administrator and as a teacher of blind students. He is a crowd favorite here at our NOPBC conferences. Every time we go over questionnaires at the end of convention, people want more Fred! So we're going to give you more Fred this morning.
Be careful what you wish for. [Laughter] I am so excited about the Braille Readers Are Leaders winners who are here at this convention! I'll be thinking of you as I go through my Braille copy of the convention agenda--I noticed that it has 103 pages! I didn't read Braille when I was growing up, and as a result I'm not as fluent a reader as you guys are or will be.
The future for blind people is brighter today than it has ever been. That is true, frankly, because of the National Federation of the Blind. The Federation believes in blind people. That means all blind people, including blind children. It means all blind children, including those who have disabilities in addition to blindness. We do not write anyone off. We believe in blind people.
I have been blind since the age of seven. I had some vision after age seven and became totally blind when I was sixteen. From the time I was seven until I was sixteen I did not read. I listened to recorded books. I heard a lot of material, but I did not read until I was sixteen years old. At that time I taught myself Braille and taught myself how to read. I remember the first book I read in Braille was George Orwell's Animal Farm. I picked it because it was short; it was in only one volume. When I started to read it I timed myself, and it took me forty-eight minutes to read a page! (I would try to figure out how many words per minute that is, but I might end up figuring out how many minutes per word!) [Laughter] I came across words like neighbor. Have you ever tried to sound out the word neighbor if you've never learned to read?
When my kids were little I got Braille books so I could read aloud to them. I had to prepare first by reading the book over and over to myself so that I'd be able to read smoothly and they wouldn't get bored. I remember coming across a word that was spelled a-c-r-e. The Hundred Ack-ree Wood. [Laughter] Of course, the word was acre, but I didn't know that.
It was a tragedy. My literacy was compromised, not only as a kid in school but for all my life. But that is not the real essence of the tragedy. The tragedy is that my compromised literacy reinforced in me a belief that as a blind person I could not do the things that other people could do. It reinforced in me a feeling of inferiority, a belief that others around me were more capable than I was. I didn't have a cane. I didn't know how to read. I spent much of my time waiting. I hated going places with my family because wherever we went I got plunked in a chair. I would sit there waiting, and now and then somebody might come by and say something to me. It was a horrific, passive existence. The tragedy is that I believed that's what life always would be like for me because of my blindness.
Because you and your blind children are here at this convention, your kids are getting opportunities to shape a very different view of blindness from the one I had as a youngster. I'm on the National Scholarship Committee, and I remember years ago meeting a young man who had just graduated from high school and was going off to college in the fall. He wanted to major in composite materials engineering. I said to him, "When I was your age I didn't know there was such a thing!" He said, "When you were my age, there wasn't!" [Laughter] What a very different perspective on life! That's what the Federation offers.
We push Braille for two reasons. Obviously literacy is one of them. Literacy is the foundation of education. But we push Braille for another reason, too. We push Braille because we want young blind people to grow up believing that they can do what other people do, that they can read as well as sighted kids read. We read differently, but Braille is not a make-do reading system.
Let me tell you a story about confidence and capability. Some years ago we had our convention at the Galt House, a big hotel in Louisville, Kentucky. It's actually two hotels connected by a sky bridge. One day I was in the East Tower heading over to the West Tower, and I met a blind girl who was about ten years old. She got off the elevator and started asking people where the sky bridge was. I thought, this little girl is out here by herself? Ten years old? I'm all for independence, but as a parent it made me a little nervous! So I walked with her. We walked across the sky bridge, and I told her that off to our right was the Ohio River. You could hear the bell of a boat out there and some music that was playing. I found out that she had wanted to get continental breakfast in the East Tower, so her parents gave her some money. She went downstairs, found her way from the West Tower across to the East Tower, went down to the lobby level, found the continental breakfast line, bought her breakfast, and was walking back to her room.
We got back to the West Tower and I asked her if she needed help finding her room. She said no, and she got on the elevator and went away. I turned around and there was Mom, who had been following her. [Laughter]
I think about how different that life experience is from mine at that girl's age. Sure, you're not going to let your ten-year-old wander around a big hotel unsupervised--for safety reasons, but not because of blindness. That little girl is going to grow up with a level of confidence and a belief in herself because she's learning an important skill. The younger we learn a skill, the easier it is and the more facility we'll have. It's not only the mechanics of moving around independently. It's the mindset of thinking, If I want to go get breakfast, I'll get breakfast. It's about believing that you can do whatever you want to do. It's about believing that if we don't yet know a nonvisual way to do something, we'll find a way.
Looking to the future--the future starts today. The future for your kids is bright. You are part of a family that believes in you and believes in your children. We are ready and willing to do anything that we can to help promote opportunities beyond what many of us had as blind people growing up. Congratulations to all of you Braille Readers Are Leaders winners! I'll be looking for you guys to help me read the agenda!
by Mary Fernandez
From the Editor: Mary Fernandez is a senior at Emory University in Atlanta, where she majors in psychology and music. She serves on the board of the National Association of Blind Students (NABS) and was a mentor for blind children at the Jernigan Institute's 2010 Junior Science Academy.
For both the sighted and the blind, social skills are an essential component of success. Following are some issues and tips that I discussed with parents of blind children at the 2011 NFB national convention. By no means am I the go-to expert on social skills. However, all of the situations I have outlined come from my personal experience and from the experiences of others. As a blind person, I have faced many of these issues myself. The tips I share here come directly from what worked for me and for others.
In this seminar I have tried to be direct and honest. As parents, you will probably realize that you have done some of the things I discuss. But that's okay! By sitting here today you are taking steps to help your blind child become the best adult she or he can be. Do not blame yourself for anything you may or may not have done. You are a wonderful parent, and you are doing the very best you can for your child.
So your child is blind. What do you do? Here are some steps that might help you deal with this new challenge in life.
Get connected with the NFB! Just by being here you have taken that first step. This organization offers great resources and information. Whether you need to know about Braille and mobility or just want to talk to another parent of a blind child, this is the place to find what you need. The information that is available through the Federation comes from the true experts on blindness--blind people who live with blindness every day. Ask yourself what you want for your child. Once you determine that answer, you can decide where to get the best information.
Talk to blind people. The NFB has plenty of blind people to pick from. Meet some professionals, some parents, some students. You are not supposed to know everything there is to know about blindness, so ask questions of those of us who are blind.
Finally, do not underestimate your child. Do not set any lower expectations for your blind child than you would for a child who is sighted. Expectations shape us and our desire to succeed. If you want your child to develop a healthy sense of worth and self-esteem, set the bar high. Let your child know that he or she can accomplish anything with your love and support. One of those expectations should be that your child will have appropriate social skills.
Why are social skills so important?
From an early age we begin to socialize. We interact with our parents, our family, and with other children. Although your child is blind, he or she has the same need to interact as anyone else.
Help your blind child develop as normally as possible. How would you react if your child were to throw a tantrum at an inopportune time? Would you let it go because he is blind, or would you discipline him as you would any other child? Blind or sighted, every child should be disciplined appropriately. In this way parents start to teach their children what is and isn't appropriate public behavior. Blind children also learn that they are not entitled to misbehave simply because they are blind. Discipline is especially important if your child has siblings. Picking favorites among children is never a good idea and will damage the relationship between the blind child and his or her brothers and sisters.
Exploring the World
Don't be afraid to let your child walk, run, climb, and tumble. All toddlers fall, and all babies run into things as they explore their world. Let your blind child do the same. When she falls, she will get up again. It's okay to have normal fears about children's safety, but just as you conquer your fears with your sighted children, you need to do the same with your children who are blind. Don't delay your blind child's development because you don't want her to get hurt.
The use of a cane will help your blind child learn to move about freely and comfortably. If a cane is a foot long, that is another foot of the world that you are opening up to him. Put a cane in your child's hand early on, even if he only bangs it around. Giving him more space to explore will help him later on with mobility and independence.
Speaking of exploration ... Touch is one of the primary ways in which blind people experience the world. Let your babies and toddlers touch everything they can. Show them what things look like by letting them touch and explore thoroughly. It's fun! Later on you will have to teach that it may not be acceptable to touch things in some settings away from home. But wherever it is possible, let your child touch.
Another important issue as your toddler grows up is to address blindisms early on so that they do not become habits. Blindisms are behaviors like rubbing the eyes constantly, rocking, swaying, head-nodding, etc. Put a stop to those behaviors before they become deeply entrenched.
One of the problems that parents face is how to help their blind children have friends. First, realize that though there are many things you can do to facilitate this process, you can't do all of them. Creating and maintaining friendships is a skill we develop over a lifetime. It can be a difficult process for adults, and it is important that your children learn to make friends on their own.
With that said, what are some things you can do to help?
Talk to your child about the boys and girls at school. What are they like? Do they play on the playground? Allow your child to invite friends over for a playdate. This will make it easier on the other parent, who might not be educated about blindness and probably would not know what to do with your child. Invite your child's friend to your house, and also invite the parent. Let the parent see how the children interact and talk about blindness in the context of your children's friendship. This will help the other parent feel more at ease. If there is an invitation for a playdate at the friend's house, let your child go.
Friendships are often tested on the playground. Blind children are sometimes seen standing alone while everyone else plays. If your child is still very young, it would be okay to talk to the teacher about this. Friendships start inside the classroom and not outside on the playground. If your child and another little girl and boy are good friends in class, the teacher may guide your child to where those children are playing. Many six-year-olds forget about everything else when they see slides. Boys are a bit more challenging than girls, because they tend to run around a lot more. Encouraging friendships outside school will make the process of playing at school a lot easier.
Sharing and Caring
From an early age most children are taught to share toys and snacks, to comfort others when they are sad, and to "do unto others as you would have them do unto you." You need to be as diligent teaching these concepts to your blind child as you are with your other children. In doing research for this presentation, I came across some ridiculous articles claiming that blind children cannot learn empathy because they don't see facial expressions. This premise is utterly untrue. Empathy comes not only from seeing people but from voice clues and the things that people say. How do you know that your sister is sad when you talk to her on the phone? Your blind child is entirely capable of learning to have empathy for others. However, if your child comes to view others as personal servants whose purpose in life is to wait on him and do his bidding, he will fail to understand that people have their own needs and feelings. Blind children should never be given a sense of entitlement because they are blind.
Some blind children have trouble with the concept of personal space. What constitutes personal space varies from one culture to another. In the United States we generally expect people to stand at least an arm's length away from us when we talk. People become uncomfortable when someone stands too close for no apparent reason. A blind child needs to learn how to stand at a comfortable distance from others. Also, it is not appropriate for your child to touch people's faces when they meet.
Finally, teach your child to eat properly with a fork, knife, and spoon. She will be clumsy at the beginning like any other child, but she'll get the hang of it, never fear!
The Teen Years
Someday your child will become a teenager! You will face the same challenges that other parents of teenagers face. Even during this difficult phase you should truly encourage your child to get out of the house and meet people. Encourage him to join school clubs, do community service, get a summer job, or attend an NFB summer camp. If he wants to be in the marching band, talk to blind people who have been in marching bands and find out what techniques worked for them. I'm a singer, and I sang in choirs all through high school. I took part in national competitions in other states and made a lot of friends that way.
Most teens struggle to figure out who they are and what they want to become. As a blind young adult, your child may sometimes feel alone, as though no one else understands. It is important for your child to meet other blind people. When your child meets blind adults with careers and families, he will realize more fully the possibilities for his own life.
Inevitably, your child will want to date like other teens. Naturally you will demand that your child act according to your beliefs and values around dating. Today it is common for teens to engage in PDA, or public displays of affection. You will see teenagers kissing in parking lots, malls, and other public places. It is important for your child to know that people are always watching, and that PDA really is public.
Blind teens should be age appropriate when it comes to personal hygiene and fashion. Boys and girls should do their own shaving. Girls should wash and arrange their own hair, apply their own makeup if they choose to use it, and dress according to their own sense of style.
Fashion is very important in your child's quest to have friends. Don't insist upon dressing your child according to what you wear yourself. If you do so, most likely your child won't be wearing what other teens wear. Take your child to a clothing store and have him or her talk to a personal shopper. Also, let your child shop with friends. Learn what current styles look good on your child. Let your child know what colors, cuts, and styles suit her best. Although you may not want your fourteen-year-old daughter to wear makeup, she should know how to put makeup on before she goes to college. Blind people use certain techniques for putting on makeup, so learn them and help your child learn. Many blind women in the NFB are more than happy to pass on their tips and tricks, so please ask!
Every child is different, and you know your child better than anyone else does. Raise your child as you see fit, but always set high expectations. All of the successful blind people I know have parents who are supportive and loving. They have parents who, at one time or another, have told them to get it together and get a life. Thanks for listening and considering these points. And congratulations on being an exceptional parent.
by Jerry G. Petroff, PhD
From the Editor: Dr. Jerry G. Petroff is an associate professor in the Department of Education at the College of New Jersey. This article is based on a presentation he gave at the NOPBC conference during the 2011 NFB convention. Dr. Petroff can be reached at [email protected]
After hundreds of corrections, your child still presents with the same problematic behavior. Over and over you correct him in response, but nothing changes. Perhaps the behavior isn't merely annoying. Maybe, for no apparent reason, your child does things to hurt himself/herself or to harm others.
These troubling scenarios are not unique to children who are blind or visually impaired or to children with other disabilities. They can appear in all children. Problem behaviors occur differently in each child. Characteristics vary over a wide range. These characteristics include duration (how long the behavior lasts), discrimination (where it takes place), intensity (how hard it is performed), and frequency (how often it happens).
For children who are blind or visually impaired, challenging behaviors often are correlated with a desire to communicate and/or an act of self-determination. However, when Billy throws his food across the room, somehow parents never respond with, "Billy is just communicating that he doesn't like his vegetables." When Mary runs away, her parents are unlikely to say, "She's just trying to demonstrate her independence." When children act in ways that are inappropriate, parents and others are often less than understanding.
This article is written to provide a framework for understanding the adaptive nature of behavior in blind children, behavior that people generally describe as "maladaptive." Our children know exactly what they are doing and why. It is our job as parents and teachers to understand what they are saying and teach them another way.
Lesson #1 Understanding the Human Spirit
George C. Scott once said, "The human spirit is stronger than anything that could happen to it." This statement couldn't be more true. Every day, especially at school, many blind children face situations that would make most sighted children give up. But they don't. Instead, they advocate for themselves, and we are proud of them. We are proud of them, except when they advocate for themselves by talking too much, maintaining repetitive movements, throwing things, and demonstrating other less than desirable behaviors.
These children are over-controlled and under-influenced. They don't have the words to explain what they feel. They don't have the skills to ask someone to explain what is happening in the classroom, and they don't know how to explain their need to move their bodies when they are not engaged by a classroom activity. The blind child who learns to stay in one place, be quiet, and endure is rarely considered to have a behavior problem. That child, too, is demonstrating that the human spirit is stronger than anything that could happen to it.
Lesson #2 Understanding Human Behavior
Blind children can be most creative in their efforts to have their needs met, and they may have inventive responses to an innate need for control in their lives. Their efforts are often puzzling to parents and challenging to teachers. However, we must be reminded of the basic realities concerning human behavior. All behavior is triggered by some event, action, or circumstance that occurs prior to the behavior itself. This action or circumstance is called the antecedent. All behavior is then reinforced by what occurs after it is exhibited. This aftereffect is called a consequence. Paying very close attention to antecedents and consequences will give clues about why the behavior is occurring.
Children will only exercise desired behavior when they possess the necessary skills and when the behavior is sufficiently reinforced. It should be noted that human behavior may manifest itself in somewhat complicated ways, making it difficult to figure out what is going on. We must be careful not to jump to hasty conclusions about the underlying causes of a child's behavior.
Lesson #3 Understanding Problem Behavior
Once we understand the nature of how people learn and develop skills (which are behaviors) in everyday life, we can begin to understand the nature of challenging behaviors in our children. In order to solve behavior problems, we must recognize that they are a function of the child. Challenging behaviors serve a purpose that is very real to the individual.
For example, Johnny is a blind child who doesn't like noisy and confusing environments. Although he has expressed his dislike for the school cafeteria, he is mandated to eat his lunch there with his sighted peers. As a result, each day during math class, the period prior to lunch, Johnny starts to talk out loud. He purposely drops his Brailler on the floor and picks a fight with one of his classmates. These actions force the teacher to send Johnny to the vice principal. In turn, the vice principal assigns Johnny a detention lunch in a quiet room with others who also have broken the rules.
The school wants Johnny to stop what he is doing in math class. Therefore, the teacher and vice principal apply a punishment--removing him from lunch with his peers and friends. They are not focused on preventing the behavior by understanding the function it serves for Johnny. They merely apply force or control to get what they want.
If Johnny began to exhibit problem behaviors suddenly, in many environments throughout the day, we must first consider whether there is a medical cause. We should also find out whether Johnny is going through any major changes in his life, such as parents' divorce or the death of a loved one. Most sudden behavior problems develop in response to sickness or change.
Lesson #4 Understanding Old and New Approaches to Challenging Behavior
In responding to Johnny's problem behavior in math class, the school employed a traditional punishment approach. It is important to understand what is involved in a punishment behavior strategy. Punishment is a tool for creating an association between a behavior and a consequence. The punishment is a change in the surroundings or an event that reduces the likelihood that the undesired behavior will occur again. In this traditional approach, it is not important or necessary to understand the function that the behavior serves.
Traditional methods of behavior management or behavior modification may also involve the use of positive reinforcement. Desired behavior may be rewarded with praise, food, or other consequences.
Strict traditional operant conditioning is slowly being transformed by new practices based on the understandings described above. This new approach is referred to as positive behavior support. Positive behavior support is a general term that refers to the use of interventions that focus on antecedents. Effort is required to determine the function of the behavior for the individual. A series of questions must be asked and answered systematically. Why does Johnny misbehave in math class? What can we do to prevent Johnny from misbehaving? How can we reinforce his appropriate behavior?
Lesson #5 Understanding Positive Behavior Support Practices
The use of positive behavior support mandates that we apply a systematic approach to attempting to determine the causes of behavior problems in children. We must then use that information to design an intervention that will support positive alternatives. The approach begins with a clear statement that describes the behavior and presents information relative to identifying its cause or function. This process is referred to as a functional behavioral assessment (FBA). It should involve the participation of those who know and have contact with the child. The following line of inquiry contains five questions that this author considers in conducting a behavior assessment:
1) When is the person most likely to engage in the problem behavior?
2) What specific events appear to contribute to the person's problem behavior?
3) What function or functions does the problem behavior serve for the person?
4) What might the person be communicating through problem behavior?
5) When is the person most successful, and, therefore, least likely to engage in problem behavior?
It is important to conduct an organized and comprehensive assessment. When assumptions are made about a child's behavior that are not verified by an assessment process, they may be incorrect. In Johnny's case, the teacher concluded that he doesn't like math, especially since he is just beginning to learn the Nemeth Code. In fact, this was not the case at all. Johnny could not handle the noise and chaos of the cafeteria. The result of the teacher's assumption did not eliminate Johnny's behavior. In fact, her assumptions reinforced his behavior, because as a consequence he did not have to go to the cafeteria to eat his lunch. The chance to support Johnny appropriately was lost.
When an appropriate assessment is completed, a solution or a behavior support plan should be developed. The plan should be implemented to test the conclusions about the child's behavior. If the behavior persists, the assessment process should begin again.
This discussion began with the idea that blind children often are not provided with the same level of control in their lives that sighted children have. There exists a balance that all of us must attempt to maintain in our lives. Our lives are full of challenges, experiences, opportunities, and responsibilities. We must strike a balance between things we can control and things that we can't. When there is an imbalance between what controls us and what we can control, many of us experience undesirable behaviors.
Recall a day when you just couldn't deal with one more problem or one more task. How did you feel? What did you do? I suppose the answer to that question can't be publicly stated!
If you can recall those difficult times in your own life, think of your children or students who are blind. Blind children often experience exclusion. They are told to wait on the sidelines while others engage in activity. Their need for verbal or hands-on explanations of what others are doing is often overlooked. They may not have the skills to move about freely, making them depend on others much of the time. In an environment that they do not fully understand, they count on routine for support. It isn't hard to imagine why so many blind children seek power and control in sometimes inappropriate ways.
We need to respond to problem behaviors in new ways--not by trying to take greater control, but by giving control back in a positive manner. When we implement this approach, our children and students will be much happier and better-behaved.
by Carol Akers
From the Editor: Federation philosophy establishes that the disability of blindness need not prevent a person from living independently. However, when a blind child has significant additional disabilities, she or he may always require some degree of assistance and support. Carol Akers, president of the Parents of Blind Children of Ohio, addressed the issues around long-term planning for adult children.
Sometimes I wonder what it would be like to have a child who is "just blind." That may sound strange to some people, but when your child has additional disabilities you come to view blindness as a comparatively minor challenge.
My son, Dustin, was severely shaken by his father when he was only four months old. The incident resulted in traumatic brain injury from shaken baby syndrome, or SBS. Before that incident, Dustin was a typical, happy, blue-eyed baby boy. The months following the severe shaking were intense and full of prayers. No one could tell me anything about SBS or its prognosis. The doctors did say that I should hope and pray for my son to die while he was in his coma. They said that if he survived, most likely he would never be able to walk or talk. When it appeared that Dustin would live, they told me I should put him into an institution for children like him. They said that I should not think of taking him home, as he would need too much care and would never be "normal." If I took him home, they assured me that all I could do was love him; he wouldn't live long.
I did take Dustin home--after all, he was my son. And yes, I struggled through tears, fear, and uncertainty. There were no formal follow-up studies on children affected by SBS. There was no support system, and I had no guidance beyond my immediate family and a few caring therapists. There was no one I could call with questions, no one to give me a peek into the future. I was alone.
One day a flier came to my home, and it described a meeting an hour away for parents of blind children! I was ecstatic to learn that perhaps there was someone I could talk to and learn from. By that time Dusty was eight months old. I knew only that he was blind and that no one offered any hope for a positive future. Imagine my amazement when I met the president of the Parents of Blind Children of Ohio and her blind husband at this meeting! They had kind, positive words for me. I was in tears!
That was over twenty-six years ago, and I am still here. Dustin has surpassed all the initial expectations that the doctors had for him. He walks wearing leg braces for support. He is a very social fellow who loves to meet new people and talk to everyone. He has no problem eating; he just loves to eat! He has been a very special gift to me with his loving, innocent, childlike demeanor. I have learned so much from and with him. And look at all the great people I never would have met if Dustin had not been in my life.
I have had to make my own path over the years, but I have done so with the support of my NFB family. Dustin's future is different from that of many blind young people. It requires planning to provide for him and to protect him after I am gone. This future planning is something else I have had to learn about on my journey with Dustin. I would like to share some of the things I have learned that may be of help to other parents and guardians of blind children with additional disabilities.
What will happen when your child is an adult? As a concerned parent you need to ask yourself this question. There are many options available at many levels of need or care, and it is up to you to determine which ones will best suit your particular child. With the education system and all its support and services behind you, you now hold the key to what life will be like for your child in the future. This is especially true in the case of children and young adults with additional disabilities. Some of the options available for adults with multiple disabilities include the following:
Day Habilitation Programs--These are basically social programs with community activities and outings shared with other consumers. A program is developed to meet the specific needs of each consumer.
Living Skills Centers--These centers focus on training in activities of daily living and may include some training for minor job tasks.
Goodwill Industries--As this program is employment-oriented, participants must be able to focus on tasks and to work for at least four hours per day. Jobs may be held within a sheltered workshop or in the community with supportive counselors.
Association for the Developmentally Disabled--This program provides on-site custodial care, focusing on weekday respite for the families of severely disabled persons.
Creative Housing/Group Home--Living arrangements may be provided in a county- or agency-owned house or an apartment shared with one to three consumers. Homes are staffed according to the needs of the consumers, with up to 24-hour services available.
Home-based Community Waiver Program--This is a Medicaid-based program to allow persons to remain in their own homes with service providers. In Ohio the program requires an application through the Department of Job and Family Services and may have a waiting list for an open slot.
Department of Developmental Delay--Formerly known as the MRDD, this agency sponsors Medicaid Waiver programs for people with various levels of need. It may have a waiting list for an open slot.
No matter which program best suits your young adult, it is important to remain involved as a parent and/or guardian. Monitor the activities of the program and the compatibility of the staff with your child. Does the program keep your son or daughter busy and stimulated? The school programs kept them occupied, so try to maintain the same level of activity. Here are some ideas to keep in mind:
Suggest activities in which your child likes to participate.
Continue to help your child feel like an important participant in life activities.
Maintain involvement in social events throughout the community, such as church functions and family gatherings.
Encourage participation in fun activities such as bowling, billiards, baseball games, festivals, and visits to the pet store and zoo.
If possible, help your child maintain contact with school friends.
Lack of activities and decreased social contact can lead to increased behavior problems, acting out, boredom, and even depression. This scenario can lead to the need for adjustments or additions to medication. Just what we need! More medications!
No More IEPs, but There's Still Paperwork!
When our children graduate into the adult world, their IEPs become ISPs (Individual Service Plans) or ASPs (All Service Plans). These plans contain all of the details of the daily services and the providers required to meet the individual's needs for safe care. Meetings continue, but different people are involved. Instead of the school staff attending, there are now service providers, therapists, case managers, and direct care staff involved in the development of goals and working to meet the current needs. The meeting attendees may include physical, occupational, or speech therapists, along with personal care assistants and nursing staff. The team will address the needs that exist in order for proper care and assistance to continue. It is important to remain vigilant with all paperwork, just as in the past with the child's IEPs. This is just another new battle for parents of blind children with additional disabilities.
If your child did not qualify for SSI or Medicaid while he/she was under the age of eighteen, due to parents' income, now that should change. Your adult child may qualify for other government programs as well. You might assume that you will be in charge of the care and decision-making for your child with multiple disabilities for as long as you live. It may surprise you to learn that this is not necessarily the case. Once a child reaches the magical age of eighteen, he or she is considered an adult and is responsible for all decisions. The law does not take into account that a child may not be capable of making life, financial, or medical decisions on his/her own. By becoming the legal guardian of your young adult child, you will be able to speak for him/her and make important decisions. If you do not take this critical step, it is possible that someone else could petition the court for guardianship and take charge of your child's future. Your child could even become a ward of the state.
Familiarize yourself with your state's laws and procedures regarding guardianship. Contact the local probate court and ask for information. In Ohio, I was fortunate to know someone who had recently been through the process and helped to guide me in the right direction. Free copies of all the required documents were available at the probate court. I was able to complete them, place my name and date at the bottom of each page as preparer, file the documents with the court, and have a hearing with the judge, saving myself the attorney's fee of three thousand dollars. Other items that were necessary to complete the process were:
A physician's examination and statement verifying that the child was unable to make appropriate decisions and/or live on his/her own.
Notification of all family members (siblings, grandparents, and non-custodial parent) who could possibly desire to be appointed as guardian and their consent to my petition for guardian status. If someone other than a parent petitions for guardianship, the court can require a surety bond that will protect the child from persons who do not have his/her best interest in mind.
Evidence of the child's monthly income--SSI, child support, employment, etc.
Evidence of how the income is spent to meet the needs of the child (housing, food, clothing, savings, burial plan, etc.) This breakdown displays how the child's needs are being met and ensures that the child is not being exploited.
For me, gathering this information was a great example of the power of parent-to-parent knowledge and experience sharing.
Gifts and Legacies
While SSI and Medicaid are very important to people with disabilities, they are forms of government assistance and require that the recipient qualify for benefits. For that reason, it is vital that parents educate family members and anyone else who might want to bestow financial gifts on the child receiving this assistance. All future planning must be carefully crafted in order to preserve these funding sources and avoid disqualifying the individual from government benefits. Limits are set on the amount of assets a person can have--typically no more than two thousand dollars. This includes anything the child may own such as property, bank accounts, or life insurance and burial plans. SSI is considered a needs based program, providing just enough money to enable a person to survive. It is expected that anything of value owned by the recipient will be liquidated and used to provide funding for food, shelter, and clothing.
At times parents, friends, and extended family members may try to help a special needs child by leaving a bequest in a will or by naming him or her as beneficiary of a life insurance policy. However, as the beneficiary of a monetary gift or settlement, the child will lose all government benefits such as SSI and Medicaid until the assets drop within the qualifying limit. At that point the disabled person is eligible to reapply for the assistance programs. In other words, the hundred-thousand-dollar insurance benefit that was intended to make the disabled person's life easier and more pleasant suddenly becomes the sole source of income to cover all expenses--food, housing, clothing, medical care, and prescriptions. An inheritance that should improve a person's life can actually make it more difficult. So much for good intentions!
There are, however, processes that allow extra assets to be held in trust for the person receiving SSI and Medicaid benefits. This process is handled by attorneys who specialize in or have experience with setting up Special or Supplemental Needs Trusts (SNT's.) Monies from these trusts are not given directly to the child, but are handled by a third party who is responsible for overseeing the trust and paying for goods and services used by the person with the disability. The SNT can be used for expenditures such as:
Out of pocket medical or dental expenses, eyeglasses, independent medical check-ups.
Transportation, including vehicle purchase, maintenance, and insurance.
Athletic training or competitions.
Purchase of materials for hobbies, recreational or entertainment activities, vacations.
Purchase of goods and services to add to quality of life, such as computers, furniture, electronics, videos.
Personal care assistants or escort.
What better way to share information about your son or daughter than to document it! Include pictures of friends, family, routines, familiar places and events, and favorite activities your child enjoys. These life-books can be used to help train caregivers or people who are new in your child's life. The life-book can be a valuable tool for those who need to learn ways to make your child comfortable in new or changing situations. Here are some other things to include in a life-book:
Descriptions and special instructions--that favorite peanut butter, banana, and grape jelly sandwich.
Information about medications, hospitalizations, surgeries, and doctors, with contact information and specialty.
Information about pharmacies and equipment providers.
Lists of significant events in the disabled person's life, such as weddings, births, and deaths of loved ones.
Descriptions of comfort items or activities, favorite places, stories, and key people for calming.
Names and addresses of places where the disabled person attends activities, such as a church, park, or YMCA.
List of contacts who know your child's habits, behavior, and needs.
Information about medical and life insurance.
State I.D. (you may want to include a copy).
List of important phone numbers.
Source of income for expenses and supplemental needs.
Letter of Intent
Create a Letter of Intent to describe what you intend to happen with your child if you are no longer able to assist or if you are no longer around to provide direction. This document should explain in detail your goals and plans for your child's life and designate who will be there to help him or her.
SAVE ALL INFORMATION ON CD, FLASH DRIVE, or DVD. Make copies. Keep a list of the people who have or should have a copy. Edit the copies on a need-to-know basis and make sure that someone is aware of where these copies are kept.
We all want a bright future for our children with multiple disabilities. We want them to be safe, happy, healthy, and well cared for. Ensuring a bright future means advance planning and preparation, having Plan A and Plan B ready to go. Plan A may be for your child to live at home for as long as possible, but if Plan A isn't possible, then Plan B may be living with family or friends or in a county-supported group home. These are all viable options, but only when plans are in place. Most of our special needs children will outlive us, so effective planning is crucial.
<www.bridges4kids.org/letter-of-intent-form.pdf>--Includes an 88-item checklist
<www.kidsource.com>--Enter “estate planning” in the search box.
Prudential and MetLife Insurance Companies also provide excellent information on estate planning for children with special needs.
From the Editor: The Winter 2011 issue of Future Reflections (Volume 30, Number 1) included a survey designed by mathematician Al Maneki. The questions explored how blind students learn math and do mathematical calculations. At the 2011 NFB convention in Orlando, Dr. Maneki shared the survey's preliminary findings.
As I stated in my article that appeared in Future Reflections and the Braille Monitor, the germ for the math survey sprouted from the workshop I moderated at our convention last year in Dallas, "I Survived Math Class." I'm pleased to report that the responses I have received so far have been most gratifying. We received messages from several people stating that this survey was very much needed, and that even though they were not part of the survey population, they were very interested in the results. We heard from a few teachers of blind and visually impaired students, and we are keeping track of their responses. We even heard from a sighted professor of mathematics who expressed an interest in what we are doing.
Dr. Abraham Nemeth was kind enough to respond to my survey questions. He listed his age range as "90-95." He is obviously retired, but he went into some detail about his work experiences. Although he did not directly answer the question concerning familiarity with the Nemeth Code, I thought that it would be safe to include him in that category. I understand that he is attending this convention.
So far, we have received fifty-three responses. Of these, 30 percent are students; 72 percent are Braille readers (a much higher average than for the general blind population); 10 percent are large-print readers; and 18 percent use speech output. Sixty-four percent of our respondents rated their math experiences as successful, while 36 percent did not (in my opinion, a biased result).
Among our responders who are either not retired or did not list employment status, 89 percent are employed. (This is a much higher figure than that for the general blind population.) Eleven percent are unemployed--also a skewed result.
Among our employed responders, 75 percent use Braille, 17 percent use speech, and 8 percent use large print. The vast majority of employed Braille readers also use a mix of electronic speech, live readers, or large print.
Thus far, we haven't heard from many people who had unsatisfactory math experiences. While it is often difficult to reveal one's unsuccessful experiences, we need to hear about more of these to gain an accurate picture of the state of math education for blind persons. Whether your math experiences have been successful or unsuccessful, please continue to respond to this survey. We need to hear from more of you.
While we must be wary of drawing conclusions from small samples, I want to share some of the impressions I have gathered up to this point.
Some of our respondents were fortunate enough to have Braille textbooks. When Braille was not available, they used recorded textbooks or live readers. With recorded texts, they had to cope with the inconsistencies in which mathematical material was read and the ambiguities of having diagrams and charts described verbally. The most successful respondents did not hesitate to seek clarification from their instructors and to get help from classmates, live readers, or tutors. The most successful respondents were keenly aware of how they used class time to ask questions and to find creative ways to communicate their solutions to homework assignments and test questions.
Numerous respondents commented on the significant amount of extra time that was required for them to complete their math courses. If they did their homework assignments and tests in Braille, time had to be spent on translating their work into print. If they received assignments and tests in print, these had to be read to them, and they had to read their solutions back to their readers.
There is often a disconnect between the functions of math instructors and those of teachers of the visually impaired (TVIs) or Disabled Students Services (DSS) staff. Some respondents complained that many instructors ignored the needs of their blind students, assuming that it is the job of the TVI or DSS office to teach math to them, even though this is not the case. We want and need a true partnership here. The math instructor should creatively think of nonvisual ways to teach; these nonvisual methods could also benefit sighted students. TVIs and DSS personnel should know enough math to ensure that materials are properly translated into Braille or recorded formats.
The vast majority of Braille readers claimed a degree of familiarity with the Nemeth code. I gained the distinct impression that Nemeth Code was taught as it was needed. This is as it should be. Some of the respondents said that, given rudimentary knowledge of the code, they proceeded to invent Braille symbols for their own use. This practice should be encouraged, because writing correct code can be cumbersome for notetaking. For our own notes, we can use any shortcuts we want. For reading textbooks produced for general distribution, we must use correct Nemeth Code.
More important than reading math texts is the need to work on exercises and problems to firm up one's mastery of math concepts. This area proved to be most difficult for the respondents. Electronic Braille notetakers don't work because math solutions require the simultaneous examination of multiple lines of calculations and expressions. Writing with slate and stylus was also unsatisfactory, since the page must be turned over to be read. Most Braille readers have found the best success with mechanical Braillewriters such as the Perkins, because embossing is right side up and the paper can be shifted from line to line without disturbing the position of the embossing mechanism. Large-print readers, even the few who know Braille, have used large print to write their solutions. Anyone who has developed sufficient abilities with mental arithmetic may simply dictate solutions to a live reader. None of the respondents, except for a few large-print readers, have expressed confidence in their abilities to construct diagrams and charts.
Technology, no matter how good, can only go so far in helping blind students learn math. Technology by itself will not make learning math easier. It will not turn any of us into brilliant mathematicians. But I think that there is a place for technology. The people who responded to my survey share my beliefs that:
1. We need a multi-line electronic Braille display;
2. We need smoother mechanisms to move from print to spoken math or from print to Nemeth Braille, and to go back from Nemeth Braille to print;
3. Just as we learn Nemeth Code incrementally with our math subjects, we should be taught enough LaTeX, the math typesetting software, to handle our math assignments;
4. Finally, math software such as Mathematica, Maple, and Sage must be made accessible to us, because the use of these tools in the classroom is growing.
I hope to get more responses very soon, and I hope that these responses will shed more light on the experiences we as blind people are having with our math courses. I've not yet decided how best to display a summary of responses while maintaining individual confidiality. I'm thinking about editing the more significant responses and posting them on my own web page with links from the NFB website. I believe that with additional responses, more articles will be forthcoming.
To conclude my report today, I want to quote the response I received from Sandi Ryan, a retired dietician from Ankeny, Iowa. I have her permission to quote her answer to my survey question #10, which asks for comments about how blind and visually impaired people may read and do mathematics. Here is what Sandi says.
"I feel that, as I approach my sixties, I understand a lot more about math and science than I ever thought I would. I had always been given to understand that blind people couldn't do math and science. I was fortunate to know a couple of blind electrical engineers, and they obviously had to do math! If I'd known, going in, how difficult my college career would be, I'd have backed out before I started. But I am glad I didn't know. I learned a great deal from surviving math and science classes. I learned the concepts, of course, but I also learned that I can be pretty creative and innovative when it's needed, and so can some sighted people who agreed to tutor me and used solid objects and hundreds of drawings to make sure that I understood what I needed to know. Incidentally, my tutors were always students--not in my class, but in the discipline I was studying. They took their valuable time to do things for which their payment was meager, to ensure my successful education. Several of them bought into my education as much or more than my teachers did. I am grateful that they believed in me when I wasn't sure I did! I have had a wonderful career as a registered dietician, and I look forward to the future because I have been successful!
"A woman at my university who ran the Handicapped Student Office stated, in a talk during Woman's Week, that not many disabled people are interested in math, science, technology, or engineering. I challenged her, and I still believe this is absolutely not true! I think many disabled people avoid these disciplines because they fear they cannot succeed. And I believe their well-meaning advisors and instructors encourage them to go in another direction. I would love to be around when there are so many blind and otherwise disabled science, technology, engineering, and math professionals that we aren't even pointed out as unusual! I doubt that will happen in my lifetime, but math and science are rewarding, and blind people shouldn't miss out on the rewards because they lack tools and education!"
Thanks to all of you here today. Thanks to our collective efforts in the NFB and the Jernigan Institute, we are turning Sandi's vision and our vision of a brighter math and science future into reality.
by Anil Lewis
From the Editor: At a general session of the 2011 NFB convention, Anil Lewis moderated a panel on the challenges of education for blind people in today's world. He began the discussion by talking about his own educational experience and looking at the experiences of blind children growing up today. Anil serves as director of Strategic Communications of the National Federation of the Blind. He has been a leader in the Federation since 1992, has been president of the Georgia affiliate, and has served on the national board of directors.
Today my responsibility is to moderate a panel about education. Before I bring the presenters up, I'd like to share a personal story.
When I was asked to write a bio as a member of the NFB board, I decided to disclose something I had never shared before. When I was a third grader, I was diagnosed as educably mentally retarded. My mom, God bless her, could have done one of two things. She could have argued with the diagnosis; or she could passively have accepted the diagnosis of the professionals, who supposedly knew something about this disability called blindness, and accepted their misconceptions about my ability. As a result of the second choice I would not be standing before you today. But my mom did something wonderful. She said, "Okay, I accept this, but now you have to provide services for my son so that he can overcome his disability as educably mentally retarded."
My mom was able to get her children into free summer school; we had tutoring and after-school programs. The bottom line is that I had to work harder than all the other students just to stay even, but my mom didn't make any excuses for me. She made sure I understood that it was my responsibility to work longer and harder to get where I needed to be, and I thank God that she did.
After only a few years of this intensive education, I went from the diagnosis of educably mentally retarded to being classified as gifted. [Applause] My point is not to say that I'm no longer educably mentally retarded, but that labels mean nothing in this context. If we focus on providing the services that students need in order to learn, they will learn. We must set high expectations for learning, regardless of the diagnosis, if we intend to achieve success.
You might be asking, "What does all of this talk about intellectual disability have to do with blindness?" I've told you my story about having to work harder than the other kids because I believe it is relevant to students today. Most blind kids have to work harder than other students. I had to get additional services that other students didn't get. Like me, most of our blind students have to get additional services that other students don't need or receive. We need Braille; we need O&M instruction; we need training in the alternative skills of blindness. But this doesn't make us inferior. It is simply a recognition that we need intervention to make us competitive so we can be successful. We in the Federation set high expectations because we intend for blind students to achieve nothing less than success.
I was lucky to have had this experience when I came to be the president of the NFB of Georgia. One of the things I committed myself to was programs for youth. Many of the things we did in Georgia revolved around young people in the education environment. When I started going to IEP meetings for many of our students, my eyes were opened to the blatant discrimination to which our blind children are being exposed. I remember specifically going to one IEP where I learned that many blind students were being encouraged to pursue a special-education track. They were being discouraged from seeking regular high school diplomas that they could use to extend their careers into areas where they could obtain competitive wages. I had the pleasure of being on an IEP team--you know the kind of team I'm talking about, where you have me, the student, the parent, and about twelve people from the school. This isn't much of a team if we're supposed to have democracy and are going to vote. Given the system, I was always tempted to try bringing in about twenty NFB members to balance the scale.
I remember in one IEP meeting a young lady was told, "If you pursue the special-education track, you won't have to take algebra."
The student's immediate reaction was, "Oh, I don't want to take algebra. Sign me up for this special-education track."
At this point I interrupted and said, "Oh no, you're going to take algebra, and you're going to be successful." I'm pleased to tell you that the young lady graduated with a high school diploma, and she did pursue a college education.
I remember another instance in which I served as one of two advocates. The other advocate was not affiliated with the NFB but knew a good deal about the Americans with Disabilities Act. We were joined by the student, her parents, and the rest of the IEP team. In this discussion the parents were complaining that their daughter was staying up until ten or eleven at night because she had to finish her homework assignments. They said the homework consisted of fifty mathematics problems, and that doing them was so time-consuming they were asking for an accommodation. The other advocate said, "Yes, as long as the homework is a representative sample of the things that the student is supposed to demonstrate the ability to do, then you can reduce her assignment to twenty-five problems."
Again I found myself saying, "No, no, no. You cannot. We don't want the world to reduce its expectations for blind people and then deny us jobs because we can't compete." I made some enemies during that meeting; the parents were really upset with me because I was able to convince the school system not to lower its expectations. I got a call a month later from those parents because they finally understood what I had been trying to do. Their daughter was able to be successful and competitive with her sighted peers, and no longer did she labor under the false expectation that the world had to change for her.
It's important to recognize that this organization is committed to our membership. Our strength does not come from legal expertise; our power does not necessarily come from the money we raise. The real power of this organization is love: the love in this room, the love that motivates us to succeed. I'm glad I'm able to participate in this loving family of Federationists.
In order for us to be successful in our efforts to educate, we have to make sure that we become partners and influence those who must make quality decisions for our blind students. It is a pleasure for me today to introduce two individuals who are committed to our effort of setting high expectations for our blind students. Before I bring them on, I want to do one thing. My Federation family, I charge you to get active in the way I just described: be active in IEP meetings; be a part of the team; operate from a position of respect and knowledge. You don't have to know everything about the Individuals with Disabilities Education Act to be a viable proponent in making sure that students receive a quality education. All you have to realize and understand is that it is respectable to be blind.
by Dr. Alexa Posny
Introduction by Anil Lewis: The first person I'd like to introduce is Dr. Alexa Posny. She is the assistant secretary of the Office of Special Education and Rehabilitation Services for the U.S. Department of Education. She was formerly the commissioner of the Kansas Department of Education, and in 2007 she served as director of the Office of Special Education Programs in the U.S. Department of Education. I find that spectacular--not only is she serving in the Obama administration, but she served in the Bush administration, too! This is the type of collaborative person we need on our team. We need to make sure that this type of individual embraces the philosophy of the Federation and recognizes us as colleagues.
I am honored and grateful to be part of this distinguished panel. Before I begin today I would like to congratulate the National Federation of the Blind for successfully advocating for the U.S. Treasury to produce the Louis Braille commemorative silver dollar, the very first coin ever minted with readable Braille. It's wonderful to know that proceeds from the sale of this coin will be used to promote Braille literacy programs. [Applause]
It is a great honor and privilege to serve with Secretary of Education Arne Duncan. He has said over and over again, "No belief is more damaging in education than the misperception that children with disabilities cannot really succeed and should not be challenged to reach the same high expectations as other children." I think everyone here today agrees that issues of access and high expectations for all children and adults, including those who are blind or visually impaired, is not only a moral obligation, but it is critical to the success of our nation. Anyone who has heard President Obama speak about education in the past two years, or who has listened to Arne Duncan speak since he became the secretary of education, knows how important education is to this administration. Early on, President Obama made it clear that education is a top priority. He made it his goal that by 2020 America will once again have the highest proportion of college graduates in the world.
Secretary Duncan has said that too many children show up for kindergarten already behind, and many never catch up. I couldn't agree more. We must ensure that all children with disabilities, especially infants, toddlers, and young children, are identified early, begin receiving services as soon as possible, and have access to high-quality learning options so that they do not start kindergarten at a disadvantage. Toward this end, Secretary Duncan and U.S. Health and Human Services Secretary Kathleen Sebelius announced a new, unprecedented 500-million-dollar state-level grant competition as part of the Race to the Top Early Learning Challenge Fund. This competition will reward states that create comprehensive plans to transform early learning systems with better coordination, clearer learning standards, and meaningful workforce development for all students, including students who are blind and visually impaired. [Applause]
We also know that as part of the U.S. Department of Education's 2012 budget, the authorization of IDEA is probably the only part of the agency that did not receive a decrease for 2012, but they have even asked for an increase--$200 million more for IDEA and $50 million to fund Part C. There isn't any other part of the agency that can speak to the same level. That is the commitment that Arne and the president have to working with kids with disabilities!
We know as well that students must also have the tools needed to attain a world-class education that prepares them for success in college and careers. For students who are blind or visually impaired, this includes early mastery of the alternative skills of blindness. Those of you who have visited the great state of Kansas know that it is a very rural state. For this reason, often the best place for a student who is blind to access the skills he or she needs is the Kansas State School for the Blind (KSSB). As commissioner for Kansas I visited KSSB a number of times and observed students as they learned alternative skills such as Braille, orientation and mobility, and the use of assistive technology. I remember observing orientation and mobility training for a three-year-old and remarking how natural and easy it was for him to walk with a cane and navigate his environment. I was humbled as I watched him. He was so comfortable. I reminded myself that it wasn't remarkable; it's expected. [Applause] The school for the blind expected the acquisition of these and other skills early in their students' lives.
The bottom line is this: no matter the educational setting, be that the school closest to home or a specialized school for the blind, we must consider paramount the individual needs of each student and concentrate on providing strong, high-quality instruction and skills training so that students who are blind and visually impaired will achieve true independence.
Learning doesn't stop with early childhood. It continues in elementary, secondary, and postsecondary school. We need to do a better job making sure that students with disabilities, including students who are blind or visually impaired, complete college. As is true for all students, not having a college education will prevent students with disabilities from getting that great job with a good salary, buying a home, and supporting themselves and their families. In 2008, almost 60 percent of students with disabilities graduated from high school with a diploma. This is in comparison to 67 percent of all other students who graduated with a diploma. According to the National Longitudinal Study, the second version, about 39 percent of high school graduates with disabilities enroll in some level of postsecondary program annually, typically in a community college setting. While the percentage of youths with visual impairments enrolling in some form of postsecondary education, 78 percent in 2005, is higher than for most other disability groups, barriers remain that prevent students with print disabilities from keeping up with their classmates. These roadblocks continue to frustrate and discourage students who are blind or visually impaired, pushing them further away from postsecondary goals instead of helping them to reach them. If we are going to reach President Obama's 2020 goal, we need to do a better job of making sure that more students with disabilities graduate from high school, enroll in a postsecondary institution, and complete a degree program.
In today's world, access to technology is critical in this effort. According to the 2006 Institution of Educational Sciences study, postsecondary education is now a goal for four out of every five students with disabilities who are exiting high school with a transition plan. We know that for students without disabilities technology makes things easier, but for students with disabilities technology makes things possible. [Applause] It's so nice to be talking to the choir! [Laughter]
We must ensure that every student going to college can access academic material once he or she gets there. It's as simple as this: students who are blind or visually impaired must be given meaningful access to comprehensive assistive technology instruction. When particular groups or individuals are denied access to technology, it's important to take a stand. The department's Office for Civil Rights issued guidelines to elementary and secondary schools and institutions of higher education on their legal obligation to provide students with disabilities with equal opportunity to access technology--the “infamous” Kindle Letter. [This letter of protest to Amazon was composed by the NFB and supported by a coalition.] This guidance is a critical step in the department's ongoing effort to ensure that students with disabilities receive equal access to the educational benefits and services provided by their schools, colleges, and universities. The bottom line is this: Technological devices must be accessible to students with disabilities, including students who are blind. [Applause]
Toward this end, you have probably heard of the Advisory Commission on Accessible Instructional Materials in Postsecondary Education for Students with Disabilities. I am proud to serve as a member, and I am honored to do so with people like Gaeir Dietrich. She chairs the commission, and Mark Riccobono, executive director of the NFB Jernigan Institute, serves on it as well.
Margaret Mead once said, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has." I believe this commission has the potential to open doors and bring down barriers for students with print disabilities. It is the first commission in history charged with examining accessible instructional materials for postsecondary students with disabilities. I want to assure you that it is my intent to utilize the principles of universal design for learning as the commission's work progresses. [Applause]
We know that any learning problems are resident not in the child but in the medium of instruction. For example, for students who are blind or have reading disabilities, textbooks impose barriers rather than offer opportunities for learning. UDL, Universal Design for Learning, enables, motivates, and inspires all students to achieve, regardless of background, language, or abilities. I am happy to say that UDL is a cornerstone of the U.S. Department of Education's National Education Technology Plan.
In addition to ensuring that technology and content are designed with universal access, we must also ensure that assessments are properly designed so that the opportunity to learn is maximized for all students. We must improve our assessments so they measure what matters and improve students' learning experiences, to connect teachers so they can learn from each other, and to meet the needs of all learners, students with special needs included. With that charge, forty-three states, the U.S. Virgin Islands, and the District of Columbia have adopted the Common Core Standards, internationally benchmarked standards that reflect the knowledge and skills that our young people need for success in college and careers. The potential of these standards will not be realized unless assessments measure when our students are reaching them. That's why the next generation of assessments being developed under the department's Race to the Top competition will be a game-changer. When these new assessments are used in the 2014-2015 school year, millions of children and parents will know, for the first time, whether students truly are on track for success in colleges and careers. Many teachers will finally have the assessments they have longed for--tests of critical thinking skills and complex learning tasks that are not just multiple choice, fill-in-the-bubble tests of basic skills.
Legendary coach of the Green Bay Packers, Vince Lombardi, once said, "Individual commitment to work and effort--that is what makes a team work, a company work, a society work, a civilization work." I happen to agree totally with Coach Lombardi. I truly feel that, through better technology and access skills, we can and will absolutely improve access and accountability for people who are blind and visually impaired. Mastering alternative skills of blindness, guaranteeing access to technologies, implementing appropriate assessments--all of this is vital to ensuring that all students, including students who are blind or visually impaired, have access to a complete and competitive education from the day they are born to the day they begin a career. If we can do this successfully, we can be sure that all students are contributing fully to the president's goal for America, to graduate more young people from college in 2020 than any other country in the world.
Before I go, I would be remiss not to take the time to acknowledge one of the most successful programs providing employment to business owners who are blind. I wish a very happy seventy-fifth anniversary to the Randolph-Sheppard Vending Facility Program. For seventy-five years this program has fostered many talented and creative individuals who are blind to acquire the management training and business skills necessary to realize the American Dream, a lifetime of economic opportunity, independence, and self-sufficiency for themselves and their families. With proven ability, approximately twenty-five hundred blind and visually impaired entrepreneurs have challenged preconceived notions about disability and have provided exceptional customer service to federal and state employees, the armed forces, and the general public. Happy birthday, Randolph-Sheppard!
In closing I'd like to share a quote from someone you've probably heard of. I had the great opportunity to fly on a plane with him to Athens last week. Stevie Wonder once said, "We all have ability; the difference is how we use it." Use yours wisely. Thank you very much.
by Gaeir Dietrich
From the Editor: Gaeir Dietrich (her first name rhymes with fire) chairs the Federal Commission on Accessible Instructional Materials in Postsecondary Education. She is the director of the High-Tech Center Training Unit for the California Community Colleges.
My joy in being here is the fact that I am absolutely passionate about Braille literacy. [Applause] I like to joke that I learned Braille before there was dirt. [Laughter] But after the dirt came the dinosaurs, and some of those dinosaurs are still saying that we don't need Braille, to which I respond, "Ah, so then why do the sighted kids need to learn to read print?" [Applause]
I developed a three-day training for the California Community Colleges. When I started ten years ago, we were training alternative media specialists to create Braille with a wonderful program called Duxbury, which essentially allows someone who does not know much Braille to produce it. I had a commitment that not only would I train my system to be able to create the Braille, but I wanted these sighted individuals who were not Braille transcribers to be able to read what they were creating. So I put together a three-day training course for sighted people to learn to read Braille. We refer to it as Braille boot camp. In those three days they learn uncontracted Braille (Grade I Braille) and Grade II (contracted) Braille. I've trained over two hundred and fifty sighted people now working in this field to read Braille. But what I really train is a passion for Braille. It's a beautiful system, and I am vehemently opposed to creating an illiterate society. As I said, even though I was invited to be here for other reasons, that is what gives me great joy in being here.
I have to say on another personal note, when I am at home in my state of California, I know so many of the blind people there that, whenever I see a cane or a dog coming my way, I always look to see who is at the other end because I probably know the person. But, within about five minutes of arriving at the hotel last night, I found myself completely overwhelmed. Suddenly I am surrounded by hundreds of people I don't know, and I really wish that I could. I'm so glad that Anil is referring to me as his friend, because I would like to be a friend of the Federation. [Applause]
Before Dr. Maurer pulls out his cane to shoo me off the stage, let me actually start talking about what I was invited here to speak about. I am the chair of the Federal Commission on Accessible Instructional Materials in Postsecondary Education. We refer to it as AIM, or the Postsecondary Commission, because it has the unfortunate acronym of AIMPE. Some of you have worked it out--so we don't refer to it as AIM-PEE! Instead, we refer to it just as AIM. Under the Higher Education Opportunity Act, we have been charged with reporting to Congress on the barriers to access for individuals who have print disabilities and to recommend a systematic strategy for changing that.
Our first meeting was at the end of September 2010, and we have exactly one year to complete that report. I'm told it's a very short time frame. Since this is the first time I have ever done anything like this, I don't have any basis for comparison. But I can say that getting a nineteen-member commission with people from diverse backgrounds and with differing desires and agendas onto the same page to write this report has been an interesting challenge. I want very much to thank Mark Riccobono for the support of the National Federation of the Blind. The NFB staff has made some really wonderful suggestions that will get incorporated into the final report.
In particular, the commission has been asked to look at the issues of timely delivery and quality. I worked for a number of years in publishing before I took the job that I am currently in. In publishing we always knew there was this trade-off between the amount of time you spent on something and the quality of whatever you were working on. I'm now speaking with my publisher hat on. We knew that we could make a perfect product, an error-free book, but the amount of time it would take for us to do that was prohibitive. Given that trade-off, you can do it quickly and inaccurately, or you can do it completely accurately and take a long time. So we have decided to try to provide instructional materials that are as good as those the publishers themselves are providing in print.
This means that colleges need help. We can't do it all on our own. At least we have strategies for dealing with hard-copy books. If we can't get a file from the publisher that we can use, at least we can scan it and use that as a starting point. But when the colleges are confronted with digital materials that are completely inaccessible, there is nothing we can do. We are not able to get inside the technology and create something that is equally effective--which is what the law requires. The law doesn't guarantee success, but it does guarantee an opportunity for success.
Unless digital materials are created with accessibility in mind from the beginning, there is no way for us to retrofit them. We can't do it. That's the issue that people like Chris Toth [the plaintiff in an NFB lawsuit against Florida State University] are facing. It has to be designed with accessibility in mind. That is not a technological challenge; that is a human consciousness challenge.
The work of the Federation is so important because you raise awareness. The general population has the perception that digital equals accessible. Every person in this room knows that's not true, but if you talk to the general public, they just assume that, if it's on the computer, blind people can read it. A lot of education needs to be done here. When we come out with this report, I intend not just to have information specifically about the materials and how to deal with them, but the fact that we need to change the way that we educate engineers and computer scientists. We need to make sure that accessibility is not some small branch of rehabilitation engineering, but that in every engineering course and every web design course people are taking this into consideration. It's not hard. It doesn't take a long time. What is hard is retrofitting. That's why those of us who are on the commission are going to take a really hard stand on digital materials and recommend to Congress that they must be made accessible from the beginning. There is no other option. It has to be that way, and the only reason it is not is that people are not making it a priority. It won't cost more; it's not harder. It just has to be done from the beginning. Only when that happens will you have the same quality text that the publishers provide the sighted.
One of the things that the commission was charged to look at is whether there should be a standardized electronic file format like that used in K-12 with the NIMAS format and the NIMAC repository. At this point the commission is saying, "No." Let me tell you why. We don't want a line drawn in the sand that will become a position around which there is a lot of fighting. Those of you who have been following the NIMAS and NIMAC debates know that, even though we have had this in place for a while now, our blind kids are still not getting their materials. It's not working because there is so much focus on creating a certain thing rather than a standard for how to create accessible materials. So the commission is going to propose that we establish standards for formatting, headings, page numbers, and navigation. We don't care if it's called DAISY. We don't care if it's called EPUB3. What we care about is that it is as easy for blind college students to access their materials as it is for sighted students. [Applause]
When we looked at the idea of the clearinghouse, the repository, again we made a decision that this was not the best choice. A better choice was finding some way of having a federated search, where you would be able to go online and search across all the current repositories to find the materials that you need in one place. That would mean going to one place to search and being able to search Learning Ally (which used to be RFB&D), Bookshare, APH, Project Gutenberg, and Access Next repositories so that you know whether the materials are already out there or you have to create them yourself.
We're also looking at possible market-based solutions. The reality here is that, as Alexa was saying with universal design, until you design something that is useful for the mainstream market, it's just not going to happen. So what George Kerscher is doing with helping to combine the DAISY and EPUB standards is really crucial in this effort. It will mean access to these books from the beginning in a format that will work for everyone. When I do DAISY 101 presentations, sight-dependent people come up and say, "When will we get to have this?" That's what we want them to be saying. That's what's going to drive the market. That's part of the idea of universal design.
I think sometimes there is some confusion around universal design. One of the things that I like to remind able-bodied people is that those elevators, those automatic doors in the grocery store that let you go in and out without worrying about the cart, those wonderful ramps that you use when pushing baby strollers aren't intended for you. Those are available because of the ADA and Section 504. The needs of the disabled are the needs of all of us. [Applause]
Finally, the commission was asked to look at issues around low-incidence, high-cost materials. Braille certainly falls into this category, but there is another class of instructional materials for college that falls into this category, too. That is those obscure works that graduate students need, for which only one person in the entire country may need an alternative format. That's an area where we're going to recommend that subsidies still be appropriate.
Anyone who would like to contribute anecdotes, particularly at the higher-ed level, about challenges you have, your students have, your friends have in accessing materials at the postsecondary level, I want to give you the website. It's pretty easy to remember. It's <[email protected]>. We don't want this to be a dry report for Congress to read. We want this to be full of your stories so that, when a congressman or congresswoman reads it, he or she will get the flavor of what it's really like to have these barriers, and they will want to help solve the problem.
In conclusion, following what others have said this morning, disability rights are civil rights. Taking a line from civil rights, separate but equal never is. [Applause]
Last, I want to quote from the Dear Colleague Kindle Letter. "Requiring the use of inaccessible technology is discrimination." I don't want to live in a society where we're discriminating against people based on their ability or disability. I want us to have an equal playing field for everyone with the ability to play on that field. Thank you. [Applause]
by Jeff Altman, MA, NOMCT, CVRCB
From the Editor: Sponsored by the NOPBC, the annual Cane Walk is one of the most popular convention highlights for blind children and their families. In this article Cane Walk organizer Jeff Altman explains how it began, how it works, and why it is important.
Since 2001 I have had the good fortune to be part of the Cane Walk, a remarkable event that is held each year at the national convention of the National Federation of the Blind. The Cane Walk grew out of the work of Joseph Cutter, one of the finest and most influential orientation and mobility instructors in this country. Early in his professional career, Joe recognized that blind children need the opportunity to learn by exploring the world around them, just as sighted children do. He understood that this exploration needs to come about through self-generated movement. Joe realized that blind children need to be encouraged to move through the environment on their own in order to develop the concepts and skills necessary for independence. They must have tools and training that will enable them to reach out and interact with the world.
Joe was among the first O&M instructors to promote the notion that blind children should begin learning to use the long white cane at an early age. He firmly believed that they should be given canes even before they can walk. Initially the idea was rejected by many orientation and mobility professionals, but it was warmly embraced by the members of the National Federation of the Blind. As blind people, most NFB members understood that early exposure to the cane could make an enormous difference in the lives of blind children. Connected by a common understanding and purpose, Joe Cutter and the NFB's parents division, the National Organization of Parents of Blind Children (NOPBC), built a longstanding partnership. Because they encountered so much resistance from blindness professionals, Joe and the Federation looked for a way to give blind children and their families an opportunity to gain hands-on experience with the long white cane. The annual Cane Walk grew out of their collective brainstorming.
In the early years, the Cane Walk was a relatively small-scale event. Joe and a handful of volunteers worked with a few blind children and their families to introduce basic cane travel skills. They also tried to educate parents about their children's needs and rights. The value of this event was clear from the beginning. Through word of mouth, the Cane Walk grew year by year. At the 2011 convention two separate sessions were held to accommodate all of the families that wished to take part.
After the first few years, students from the orientation and mobility program at Louisiana Tech University became involved, along with cane travel instructors from across the country. Approximately fifty families participated in the 2011 Cane Walk. Some were attending for the first time, while many others return each year to partake of this opportunity. It is amazing to see the growth in the young people who return for this event from one year to the next. It is equally satisfying to witness the excitement of the families who participate for the first time.
The Cane Walk begins with an introductory discussion of blindness and blindness skills. Instructors talk about the importance of developing independent travel skills and a positive philosophy regarding blindness. They explain why it is important for blind people to learn cane travel and invite each child and family to take part in a travel lesson with an experienced instructor. Each session is approximately an hour and a half in length. Most participants have the opportunity to use the long white cane in a variety of situations and to learn some basic orientation skills. Parents find out that they can be directly involved in helping their children learn to travel independently.
Those of us who volunteer our time and skills to help with the Cane Walk have the satisfaction of knowing that the things we share have the potential to make a positive change in the lives of these young people and their families. A few years ago I worked with a young lady from a small island off the coast of Florida, where she was the only blind person. She had only received a few hours of cane travel instruction in her life, and she was overwhelmed to be in such a large hotel for the first time. We discovered many things that she had never experienced before, including riding on an escalator. Understandably, the thought was very frightening to her. We worked together for some time on basic cane skills and orientation techniques as we explored a portion of the hotel. Finally, I suggested that she try the escalator, and with much trepidation she agreed. With a great deal of encouragement from me and plenty of courage on her part, she successfully negotiated both the up and down escalators. However, she seemed more relieved than excited when the lesson was over. I wasn't sure it had been such a good idea to have her take on the escalator challenge.
Later that day, my wife and I were looking around the gift shop when the young lady's mother approached us. Her daughter walked on her own beside her. "We came up here on the escalator," the young lady said excitedly, "and I rode it on my own!"
Joe Cutter's idea that blind children should be introduced to the long white cane as early as possible is gaining acceptance, and it has become common practice in many places. Joe has not been able to attend the national convention in recent years, but his contribution of the Cane Walk remains a wonderful tradition. Famlies tell us that they look forward to it every year. If your child is blind or visually impaired, please consider attending our next national convention, and please accept our invitation to register for the Cane Walk. It can make a positive difference in your child's life.
by Barbara Cheadle
From the Editor: As many readers know, Barbara Cheadle was the founder and longtime president of the National Organization of Parents of Blind Children. She established Future Reflections magazine and served as its editor for twenty-eight years. Since her retirement in May 2009 she has embarked upon a new career as a children's librarian. However, she still has a deep commitment to the NFB and the future of blind children, and she has discovered a new role at convention as coordinator of the Braille Book Fair, formerly known as the Braille Book Flea Market.
It's high noon, Tuesday, July 5th, and I'm standing in the doorway of a large, empty hotel ballroom, contemplating my future (my future for the next eight hours, anyway). When I say that the room is empty, I mean it's empty of people. It is ringed with twenty-plus eight-foot tables, each standing about three feet from the wall. There are no chairs. In the middle of the room, two more eight-foot tables stand parallel to each other, about four feet apart. Stacked around and between the center tables are over two hundred tape-sealed boxes, and fifty more will be delivered later in the afternoon. Some of the boxes are just big enough to hold a couple of print/Braille storybooks. Others are huge and hold dozens of Braille volumes. The stillness of the room is broken only by the muffled sounds of hotel workers setting up an adjoining conference room and the gentle whoosh of the air conditioner kicking on.
In exactly one hour, so I've been warned, the quiet of this room will erupt into organized pandemonium. Volunteers will attack the sealed boxes with scissors and box cutters. They will begin the frenzied four-hour process of unpacking, sorting, organizing, and getting the books out on the tables and ready for the Braille-hungry hordes that will descend on the room promptly at 5:00 p.m.
The event was the annual Braille Book Fair (formerly called the Braille Flea Market). Although I wrote the UPS grant that established the event nine years ago under the sponsorship of the National Organization of Parents of Blind Children (NOPBC) and the National Association to Promote the Use of Braille (NAPUB), this was the first time I personally coordinated every detail. It was a daunting task, but fortunately I did not have to reinvent the wheel. Peggy Chong, who managed the event for the past five years, passed on to me her blueprint for bringing organization out of chaos. I'm glad to report that her method worked. The 2011 Braille Book Fair was a huge success.
The goal of the Braille Book Fair is simple: to get more Braille books into the hands of blind children and youth. We solicit donations of used and new Braille books, and we give the books away free of charge at this event during the annual convention of the National Federation of the Blind. The Braille Book Fair/Flea Market is in a class by itself. Like a flea market, it offers mostly used goods; like a book fair, it's all about books. There is an atmosphere of crowded, bustling excitement as kids and adults eagerly browse, looking for gems and treasures, or just for a good read. This event differs from flea markets and fairs, however, because all of these books are free for the taking, and there are no limits on how many you can take. The NOPBC does collect donations to help defray the costs--a little over six hundred dollars was collected this year--but no one is charged a penny for any of the books.
This year, over fifty individuals and organizations donated about two hundred and fifty cartons of used and new Braille books. Thirty or more cartons contained new books donated by the American Action Fund for Blind Children and Adults; the National Braille Press; Seedlings Braille Books for Children, Inc.; and the Michigan-based Beth El Transcribers. We also received used Braille books from the Montana School for the Blind and other residential programs; from parents of now-grown blind children, such as Bob and Johnna Watson of Maryland; and from teachers from all over the country. Over two hundred people, including children, youth, parents, teachers, and blind adults, attended the event. They took over two hundred boxes of donated books. (The fifty remaining boxes were returned to the NFB office in Baltimore and are in the process of being sorted and packed for shipment to a school for the blind in India.) About sixty Federation volunteers--not counting the volunteer crew from UPS--worked two or more hours each throughout the afternoon and evening to pull off the event.
Our partnership with the local UPS office was a key element to the success of the 2011 event. The UPS office in Orlando received and stored boxes of donated books shipped via Free Matter for the Blind through the United States Post Office. UPS drivers delivered the boxes to the hotel on the morning of the event. Then, later that afternoon, the team leader and UPS liaison, Bessie Graham, arrived with more UPS volunteers. They set up a packing station in the center of the room for those who wanted to ship their selections home. When people finished making their selections at the tables, all they had to do was turn around and head for the center of the room. Within minutes their selections were boxed, labeled, and set aside for UPS to deliver to the post office for Free Matter shipping the next day.
While there are many sources of free and inexpensive books for sighted children, such as public libraries, school libraries, book stores, the book department in Wal-Mart, and yes--even flea markets--the resources available to blind children and their parents and teachers, although better than they used to be, are still extremely limited. The continuing success of the annual Braille Book Fair/Flea Market demonstrates how hungry children are to read Braille and to possess their very own books.
by Ann Cunningham
From the Editor: Ann Cunningham is a sculptor who teaches art at the Colorado Center for the Blind. Her work can be seen at the Denver Art Museum, the Colorado Springs Fine Arts Center, and the Joslyn Art Museum in Omaha. On display at the NFB Jernigan Institute are her bas relief portrait of Jacobus tenBroek and a series of bas reliefs depicting Erik Weihenmayer's climb of Mount Everest. Ann has a deep conviction that art can be appreciated through the sense of touch by blind and sighted people alike.
Most sighted people think of art as a purely visual medium. They are bewildered at the suggestion that blind people can appreciate and create artistic works. My years of teaching at the Colorado Center for the Blind have proven to me that touch is a valid and fulfilling way to experience art, and I have had the privilege of teaching many artistically talented blind students.
At the 2010 convention of the NFB of Colorado, my students and I set up a drop-in art room for the conventioneers. Many of our artworks were on display, and we provided clay and other materials so that visitors could make their own creations. The art room was such a popular attraction that I decided to try something similar at national convention. I invited Debbie Kent Stein to get involved, and we spent months exchanging ideas and mapping out logistics.
Early on the morning of Sunday, July 3, I got to work setting up the art room at the convention hotel in Orlando. With the help of a volunteer from Minnesota, Pat Davis, I unpacked the nearly two dozen cartons that I had sent to Orlando via UPS. We arranged art pieces on tables around the perimeter of the room. Most are bas reliefs in slate or plaster, inspired by paintings at the Colorado Springs Fine Arts Center. We also displayed a number of books with tactile illustrations that were donated to us by National Braille Press and Touch Graphics, Inc. On tables in the middle of the room we spread drawing boards for making raised-line pictures, along with clay and sculpting tools.
The room was open all day Sunday and again on Monday afternoon. Visitors were welcome to drop in at any time and stay as long as they wished.
People began to arrive as soon as the doors officially opened. The art room had been listed in the agenda, but at first traffic was relatively light. As Sunday went on, however, more and more people heard about the art room by word of mouth, and the flow of visitors increased. Volunteers were on hand to show people around and answer questions. Among them was Amelia Dickerson, one of my art students from Colorado. Some visitors asked volunteers to explain the artwork, while others preferred to explore on their own.
The art room drew people of all ages and backgrounds. We saw parents with blind children and teens, adults who had been blind all their lives, and seniors who were losing their vision. Teachers and other professionals came by to observe. Three newly-blinded artists stopped in to learn what we were doing; they were new to the Federation and new to one another.
Most people made a thorough investigation of the artwork arranged around the room. They took their time to examine each piece, not wanting to miss any detail. After they studied the sculptures and books on display, many of the visitors sat down to draw or work with clay. On average, visitors stayed for about two hours. The atmosphere was relaxed and welcoming, and we were delighted that so many people felt comfortable to experiment with their own creative expression.
The enthusiastic response of our visitors reveals how seldom blind people are allowed to have hands-on experiences with art, and it shows how much they hunger for such opportunities. One fifteen-year-old girl exclaimed, "I never imagined something like this could really happen! I never thought there could be a whole room full of art for me to touch!"
We hope to be back at Convention 2012 with works by many more artists and with some new ideas to inspire visitors' creative efforts. When you come to the NFB convention in Dallas, please drop in!
by Deborah Kent Stein
Attending a national convention of the NFB calls for a large commitment of energy, time, and resources. Often it requires time away from work and the sacrifice of other vacation plans.
What leads families to take the giant step of attending an NFB convention for the first time? What compels families to return year after year?
In the articles that follow, three parents write about their experiences and explain what convention means to them and their children. All three have become committed to the NOPBC and its goals. Penny Duffy is working to establish an NOPBC chapter in New Hampshire. Doreen Franklin is active with the Florida Parents of Blind children, and Pamela Gebert is the founder and president of the brand-new Parents of Blind Children of Alaska.
by Penny Duffy
Last July my seven-year-old daughter, Abby, and I attended our first NFB convention in Orlando, Florida. Our journey to Orlando began almost a year before, with an ordinary visit to an optician's office at the mall. A new school year was about to begin, and Abby was going to enter first grade. I hoped to get her a quick pair of glasses.
Abby couldn't see the eye chart. She couldn't see the chart at all. When the optician asked her to look at me, she looked to the side. The person doing the exam assumed that my daughter was displaying a behavior problem, but I knew that something was wrong. Something was very wrong.
As I look back over the weeks and months that followed, I remember everything through a haze. There were many visits to doctors. Professionals recommended that Abby start to learn Braille.
Accepting the idea that Abby couldn't see was a huge challenge for me. I recall that for a long time I couldn't say the B word at all. It actually made me gag.
Abby's central vision is affected. She can see a lot of things, but there are many things she can't see. It is impossible for her to read print, even large print. Fortunately, she received Braille instruction right away.
In the late winter I started to read some publications from the National Federation of the Blind. I came to realize that Abby was blind, and that it was really okay. Blind isn't a bad word. Abby is bright, curious, kind, a little sassy, and blind. Her blindness is just a part of what makes her Abby.
From that realization we found our way to Orlando.
Until the day we arrived at the Rosen Shingle Creek Hotel, I had only seen a few blind people in my entire life. Nothing could have prepared me for the clicking of hundreds of canes in the hotel lobby. I found it was beautiful music!
So many things happened for us at convention, and we had such a great time. I met wonderful people and learned so much that it took me weeks to process it all.
Here are some of Abby's favorite convention highlights.
The Braille Book Fair. Abby is a child who goes into bookstores looking for the Braille section. Having a room full of books that she could select to take home was magical. To see people get so excited about Braille warms the heart. Abby added over twenty books to her home library. When her books arrived in the mail a week after convention, she had such a smile on her face!
The Cane Walk. The Cane Walk was another exciting event. Abby welcomed the longer NFB cane and started to use it right away. She wore sleepshades and got an amazing lesson with a wonderful instructor. I'll never forget watching Abby find the escalator and ride up and down more comfortably than she ever did before. That moment alone made our convention trip worthwhile! For the rest of the week after her travel lesson, she would close her eyes whenever she took an escalator.
SeaWorld. I had never been to SeaWorld before, and it was such a treat! A wonderful touch tour had been arranged for the kids. Abby even had the chance to touch a live penguin.
Crafts and Games. During the Wednesday-night parents' workshops, crafts and games were available to keep the kids busy. Abby had so much fun! Usually she gets tired by eight o'clock, but she lasted till the meeting was over at ten. For days she talked about the things she did.
Tinkering with Tools. Tuesday was Abby's favorite day in Child Care. That day included an activity called Tinkering with Tools. The children were shown real tools, and they got to try them out. Abby loves to do things with her hands, and she really enjoyed this hands-on experience.
Being Just One More Kid. Abby loved making new friends and hanging out around the hotel pool. Wherever we went, she enjoyed not being the only blind person in the room. At convention she was just another kid.
by Doreen Franklin
My daughter, Victorria (Torrie), is six years old and visually impaired. The 2011 national convention was our second; we went to convention in Detroit in 2009. At the Cane Walk in 2009, Torrie saw me with sleepshades on, trying to find my way around the hotel. It was not easy for me, to say the least, but I learned some important lessons. When Torrie called, "Over there, Mom!" I heard echoes of the directions I tended to give her, and realized I needed to be much more specific.
In Orlando I signed us up for the Cane Walk once again. Torrie sat in the front row with a group of other children while Jeff Altman, the coordinator, gave the parents instructions. I was pleasantly surprised when Torrie borrowed a slate and stylus from one of the other kids. Torrie wrote me a Braille note that said, "I love you, mommy." What a precious gift that card was! It was all the more special because Torrie was playing with the slate and stylus, a tool she had resisted at school and at home.
Torrie has also had a lot of resistance to using her cane back home. I told Merry-Noel Chamberlain, who was my convention roommate as well as our Cane Walk instructor, that I was unsure what Torrie would do. Torrie worked with Merry-Noel for a short time, but then she stopped. "Let's get Mom a teaching cane," Merry-Noel suggested. As soon as Mom had to use a cane, too, Torrie was thrilled! I am not a spring chicken, and I found it was a bit tricky to pick up the rhythm of tapping from side to side.
Meanwhile, Torrie started to work with Merry-Noel again. Soon she was flying up and down the stairs and elevator! What joy that was! Thank you, Merry-Noel!
Later that day, NOPBC had arranged for families to go to SeaWorld for an educational program, after which we could explore the park. Of course, I took my cane with me. Things went pretty well until I accumulated a few souvenirs. That's when I got it--when you have a cane in one hand, you only have one hand free for holding other things!
I have had a neck fusion, and fun rides are out of the question for me. Two other moms--Merry-Noel and Amber Hall--took Torrie with them and their girls, Ashleah and Alayna. While I watched, they went on the Journey to Atlantis--yes, the flume ride. After everyone got off, Torrie was ecstatic! She couldn't stop talking about how she rode the Journey to Atlantis! She was much braver than I ever would have been, even if I could get on the ride. Merry-Noel and Amber gave me a keychain as a remembrance. Torrie has her own keychain, so she can remember that special ride all the time!
A little later things got really interesting. Still under sleepshades, I tried to pop into the ladies' room without taking my cane. The ladies' room was right there, only a few feet away. "Would you let Torrie do that?" Merry-Noel asked me. Of course, the answer was no, so I took my cane with me to the ladies' room--along with my purse, a souvenir cup, and assorted bags and other paraphernalia. It's not as easy as it looks!
Back at home I have continued to use the teaching cane with Torrie to help remind her of the rhythm. I get strange looks from friends. I can almost hear them ask in their heads, "When did this happen? Why are you still driving if you need a cane?" When I tell them that my cane helps Torrie to use hers, I feel less self-conscious. This is something I need to do to help Torrie! I am glad to help her in any way I can!
Cane travel was only one aspect of convention that made a difference for us. Making connections with other people was the best part of all. Most of the time, Torrie does not do well with meeting new people. She has a fear of strangers, and since she can't see them well, they must seem even more strange. Torrie is very outgoing with people she knows. Then you can't stop her or settle her down!
On Sunday in Orlando, the parents hosted a Meet and Greet event. I met two TVIs from Louisiana, who asked me about the issues we faced with Torrie in our school district. While I was busy talking, I saw that Torrie was having a good time on her own. She was flitting around the room! First she found R.J. Holloway, a little boy about her age, and they played for a while. After that, Torrie darted around the room again, talking easily with several people. I felt very proud that she was comfortable to talk to folks she did not know!
On the way back to our room, we passed a woman with a guide dog as we went down the steps. Torrie asked me how the dog knew what to do on the stairs. I had no clue, so I told her to ask the lady. Torrie did just that. She proceeded to ask how the dog knows there are stairs and how he knows what to do. The woman graciously told Torrie how the two of them work together. She then asked us for some directions, and we ended up walking together.
Then the most amazing thing happened. "Are you visually impaired or blind?" Torrie asked. I had never heard such a direct question about blindness from Torrie before. The woman told Torrie that she is blind, and Torrie asked her how she was blinded. The lady was very gracious and told Torrie how she lost her sight. She was the very essence of what the NFB is all about!
This was the first time Torrie was actually asking questions of other people! Usually she hides behind me and gets me to ask the questions. Torrie felt very comfortable at convention because, like her, nearly everyone there had a visual impairment. She didn't stick out the way she does at school as a child with a cane who needs to wear sunglasses and a visor. Here she was one of EVERYBODY!
That night was an experience I could not have expected, and I really felt energized! Thanks to the NFB, Torrie saw that there are thousands of people like her in the world. She had the experience of being in a group where she doesn't stick out. That was priceless for both of us! Thank you, NFB!
by Pamela Gebert
Last July my eleven-year-old daughter, Julia, and I flew thousands of miles from Alaska to Orlando, Florida, to attend our first National Organization of Parents of Blind Children (NOPBC) conference. We joined thousands of others at the National Federation of the Blind convention, which was held within the walls of the magnificent Rosen Shingle Creek Hotel.
On the first morning of the conference we attended the NOPBC welcoming gathering. We found ourselves among several seasoned convention participants, some of whom were founding NOPBC members and have been involved with the organization for decades. Their children are now adults, yet here they were, contributing their energies and life experiences to the conference. We also found that we were in the company of countless other conference rookies. After only a few short hours immersed in the dynamic, informative, and positive environment of the NOPBC convention, I was hooked! When you attend an NOPBC conference, what will catch your heart first is the unparalleled beauty of the connections with people who intimately appreciate the road you and your family are traveling.
The conference began with an informal gathering of young blind children with the president of the National Federation of the Blind, Dr. Marc Maurer. As he sat on the floor among them, the children shared stories of growing up blind. They talked about the benefits of using a cane and the virtues of being able to read a great Braille book. They compared the modern electronic Braillers with the old faithful Perkins Braillewriter.
The conference continued with presentations by dedicated NFB leaders who teach by example what we should expect of our blind children. Active, capable Federationists give children and their parents a better understanding of a blind person's potential. Like all young people, our blind children need good role models to help them develop realistic goals and a positive self-image. Parents who become active with the NOPBC and the NFB know that there are hundreds and thousands of blind people who are making significant contributions to our society. They exhibit good blindness skills, incorporate an exemplary philosophy on blindness into their everyday lives, and are successful in their chosen careers.
After the morning introductions, the children attended a fun and lighthearted workshop called "Clowning Around." The parents attended the first of many NOPBC workshops. Concurrent sessions were held, and there was something for everyone. The parents of infants and toddlers, school-age children, and older children preparing for college all found relevant and intriguing workshop choices. Topics included literacy for children of all abilities, technologies that may benefit blind children, and what the law says about getting assistive technology into a child's IEP (Individualized Education Plan). Experienced parents shared resources and information for preparing a child for life after high school.
One workshop was presented by a confident, well-groomed young lady who is a member of the National Association of Blind Students. She led an insightful discussion on how parents and teachers can facilitate the development of social skills and friendships. In another workshop parents heard from a blind adult about the skills a child needs to leave the nest and establish an independent life.
Over the next few days, parents encountered several other valuable seminar opportunities. In a session on age-appropriate expectations, the presenter stressed the importance of keeping our expectations high so as not to doom our children to failure. For families new to Braille, there were hands-on workshops for learning the basics of Braille reading and writing. Parents of teenagers received valuable advice on helping their children find summer and part-time jobs and preparing them for college. They obtained tips for getting through the college application process and surviving freshman year from seasoned parents and blind college students.
There just wasn't time for one person to go to everything, but I hated to miss out on anything that was offered. It didn't take long for me and my new convention friends to figure out that we must divide and conquer. We agreed to meet at the end of the day to share notes on highlights of each session.
My mother used to say that your best friends in life are people you have yet to meet. Those words seemed prophetic as Julia and I connected with one amazing new friend after another. An introduction to one particular family was unforeseen yet most appreciated.
The evening began with plans to meet for dinner and take a trip to the ice cream parlor for dessert. Within minutes of meeting and sharing a little bit of information, we moms looked each other in the eyes and knew there was an instant connection. I had goosebumps on my arms and tears welling in my eyes--only moments after meeting!
Over dinner, as we compared family stories, we realized just how parallel our experiences have been. Our girls are the same age and in the same grade in school; they have endured strikingly similar medical challenges, surgeries, and treatments since they were infants; they are both very small for their age and receive the same daily injections of medications. The girls also found much in common. They enjoyed chatting about music and Braille books. They talked nonstop from their initial introduction until the evening was over. It was as if they were, indeed, longtime friends. They truly have so much in common and so very much to share. In a decidedly heartfelt moment, the girls turned toward one another and spontaneously cheered, "New friends!" Then they yelled, "Friends forever!"
Serendipitous meetings such as this one are almost commonplace at an NOPBC conference. The conference inspires understanding, reflection, enthusiasm, hope, and serenity. In the convention hallways adult Federationists stroll by in lively dialogue; children sing, chat, and recommend favorite book titles and authors to their friends; guide dogs maneuver to and fro with their handlers; and of course, underlying it all, is the the rhythmic tapping of a thousand long white canes.
When you come to an NFB convention, the dynamic and supportive culture will reel you in. The energizing atmosphere encourages great conversations. People talk about education principles, IEPs, legal challenges, and preparing children for college life and beyond. They describe camps that teach blindness skills and scholarships for blind students. All of the possibilities for parents and their blind children truly come alive within the walls of the convention hall.
The NOPBC conference comes alive because of our families. They come from every corner of the country, bringing remarkable insight, talents, and experience. To a degree rarely found in other consumer groups, the parents sustain a stimulating and cooperative environment while nurturing a wonderfully supportive and open atmosphere.
The conference comes alive because of the seminar presenters. Guest lecturers from many fields contribute to the NOPBC's exceptional conference offerings, providing workshops and lectures on a wide range of pertinent topics.
The conference comes alive because of our NOPBC leadership. Whether teaching or guiding discussions; whether from the perspective of an academic, an author, a parent, or a rehabilitation specialist; the offerings of the NOPBC and the National Federation of the Blind are at the forefront of support, training, information, and advocacy for blind children and their families.
The whole convention comes alive because of our children. Many of them have grown up attending NFB conventions every year. They have now left their family homes, yet they maintain a profound attachment to the National Federation of the Blind and to the children who follow in their footsteps. They employ the skills, principles, and qualities of character honed at NFB conventions to achieve extraordinary professional distinction. They are leaders in classrooms, hospitals, courtrooms, and boardrooms across the land. They are private entrepreneurs, lawyers, parents, and champions for blind people and their causes. Despite the demands of school schedules or careers, NOPBC's alumni and their families remain valued and committed members of the NFB community throughout their lives.
Good ideas make a difference in the world. The National Federation of the Blind convention is a place for people who love to share ideas; who believe in the abilities of blind people; who are interested in public policy, business, information technologies, and human needs and perceptions; and who pursue the best possible futures for blind children. You'll find a community dedicated to excellence and to the education of our children. As parents, we strive to offer our children the skills, the confidence, and the courage to find fulfillment in their futures. At the NFB convention, parents and children join together to create a unique community of ideas, information, and exchange of experience. The NFB website will give you a sense of the organization's community and commitment. Better yet, come to a national convention and spend time connecting with a vibrant, creative, and welcoming community. I did, and decided that this was the place for Julia and the rest of our family. My family and I look forward to meeting you at next year's convention in Dallas, Texas!
by Dr. Dean O. Stenehjem
From the Editor: At the board meeting of the National Federation of the Blind, held at the NFB national convention, Dr. Dean O. Stenehjem received the 2011 Educator of Blind Children Award. Dr. Stenehjem serves as superintendent of the Washington State School for the Blind (WSSB). The Distinguished Educator Award carried with it a thousand-dollar prize and covered his trip to the 2011 NFB national convention in Orlando. In presenting the award, NFB President Dr. Marc Maurer said, "Dr. Stenehjem has dedicated his career to ensuring that blind students are given the tools for independence and academic success. Dr. Stenehjem's dedication is exemplified in his work developing partnerships with local school districts in Washington, ensuring that all blind students, not just those enrolled at WSSB, are given the opportunity to succeed. The National Federation of the Blind commends Dr. Stenehjem for his unwavering commitment to the education of blind students."
Dr. Stenehjem later addressed several hundred parents and educators at the meeting of the National Organization of Parents of Blind Children (NOPBC). Here is what he had to say.
As parents, don't we all have dreams and aspirations for our children? When you find out that your child is blind, deafblind, or has multiple disabilities, don't stop dreaming! Wonderful things can come your way, but you must have determination and open your heart to opportunities. You must instill in yourself and in your child the desire to become a risk taker and, hopefully, a reality dreamer.
Is it risky to dream? You bet! However, it is much more risky not to dream. Without dreamers looking to the future, there is no future--or at least the future would be pretty boring.
I have had the opportunity to work in a variety of settings and in a number of states, where I have been able to glean what I believe are some of the best approaches in working with blind and visually impaired children. I have worked with wonderful partners and teams to build programs that help students succeed. This is not just about academics, but about attitudes, expectations, and a way of life. It's about realizing that everyone deserves the chance to be what they want to be, given the right skills, tools, and intestinal fortitude to push forward even when some say it can't be done. It's about helping each child believe in himself or herself and helping parents understand the capabilities of their children.
Students need to be willing to take a risk, to take the next step. If it doesn't work out, try again. Sometimes this is as simple as dreaming about what they would like to do tomorrow and then following through with an action.
I've always applauded students and staff who are willing to take risks and push the envelope. I see my role at WSSB as a facilitator in working with students, employees, and others. We help plant the seeds of knowledge. Those seeds might be ideas, might be direction, or might be a sense of self-determination to get things moving. It is then that you need to give away some ownership and help nurture individuals so that they grow, show self-determination, pride, and confidence, and move forward on a path toward independence and success.
Let me tell you a little about the culture we have tried to instill in staff, students, and parents at the Washington State School for the Blind. One of our goals is to help students understand that their dreams can become reality. At WSSB our mission is to create an "I can" attitude, backed by skills that can make things possible. Students involved in programs on campus and off are provided options to become active participants in life's journey, which can be full of wonderful adventures and opportunities. In order for this to occur, students must believe in themselves, look for opportunities, and not be afraid of failure. Remember, Thomas Edison had a thousand failures before he created the lightbulb. Just think what would have happened if he gave up after his first attempt!
We need to instill this same type of drive within every child, and maybe even more so in the child who is blind. Students must be wonderful salespersons and strong self-advocates. They will need not only to believe in themselves, but to get others to believe in them. We need to share this important message with students so that when they run into that first obstacle they don't give up.
Dreaming is easy, but being a reality dreamer takes determination, willpower, and the ability to try again if things don't work out the first time. It also takes self-confidence, which I hope we instill in each student. Without self-confidence, people often are unwilling to be risk takers, which limits them in realizing their dreams. As we work with students and parents, we hope we can assist them not only in developing the necessary skills to be successful, but also in gaining the confidence to take the risks necessary to help students build their future.
Students in the WSSB on-campus program (which is like a big revolving door), come in and get what they need and then go back to their local districts. All students are on 24-hour IEPs. This entails a coordinated effort including academics, life skills, and expanded core skills (blindness-related skill development). It entails getting students involved with life and teaching them to accept responsibilities. Nearly all students have some type of job on campus, whether it is in the cottages during the week (students go home on the weekends), helping make a meal, setting the table, cleaning up after the meal, or working in the community. Students secure jobs based upon their current ability level, and they receive stipends. They are trained to use the fully accessible ATM on campus (provided by iQ Credit Union--another partner helping WSSB students achieve independence). They learn to manage their money (some do better than others--I guess this is the same for adults). By utilizing the ATM, students learn a new skill and parents can monitor their child's spending habits. Not only are students learning skills they will need in the future; they are learning skills that relate to just about everything they will be doing on a daily basis.
As part of the IEP process, students are involved in a program designed to help each child learn about his or her own medical needs. Once again, this is a part of being independent.
Success is not just built on academics, but on making sure that students develop all skills to be independent. For more information, please visit our website: <www.wssb.wa.gov>.
WSSB sets expectations for students based upon their abilities, helping each child grow and gain confidence. For example, a young blind girl with multiple disabilities has a job delivering mail on WSSB's campus. She could be too sick to go to school, but she still won't miss doing her job. This determination and desire to work landed her a job upon graduation. Since 1998, 80-82 percent of the graduates of our on-campus program have been successful! This represents the full range of students at WSSB, including those who are blind with additional disabilities, those who are deafblind, and those who are blind and gifted.
We track every student for eight years to help us determine what has worked, what hasn't worked, and when students seem to make the transition to employment. It was interesting to learn that the major transition seemed to happen five to six years after high school. Students may have been involved in college or vocational training, and some just plain goofed around for a while. Guess what? I think the same thing happens for sighted students. Transition studies that have been done in our country regarding disabled children often track students after graduation for only two years; I don't think this is long enough. What would the results show if we did the same studies on nondisabled students?
I'm not saying we don't have a problem with unemployment and underemployment, but what can we do to turn this around? I believe we are doing some of the right things at WSSB, but we could always be doing more.
Let me give you an example of empowerment and instilling confidence. John (a fictitious name) was a young child who was born deafblind. At a very early age he had a cochlear implant. He was fortunate to have parents who helped him receive good services before he came to WSSB. They were strong advocates for John and worked very hard at home in partnership with the programs he attended. However, he was not receiving a lot of training in blindness skills.
Over the years John grew and so did his self-determination and self-advocacy skills. When he was sixteen years old he received a second cochlear implant to assist with his orientation and mobility, helping him hear traffic sounds. Then, as a junior in high school, he received a guide dog from Leader Dogs, which has a program for deafblind individuals.
John loved animals, and in particular he loved to ride horses. His goal was to become a certified equine therapist (horse masseur). During his junior year WSSB's Braille Access Center, along with the Braille transcription program that WSSB helped create at our state's women's prison, produced all of his anatomy books in Braille with wonderful tactile graphics. Over the summer he took his exams and became certified as an equine therapist in the state of Oregon. However, he could not become certified in Washington because he had not gone through a college of massage therapy for humans.
John was frustrated. I told him, "Why not change the state law?" I was planting a seed. One day Senator Dale Brandland was on campus. I introduced him to John and said, "John, here's a person who could help you change the law." I was nurturing that seed.
Before the end of the legislative session, we worked with John on submitting written testimony and testifying in a formal hearing. As a result, the state law was changed.
Think about how empowering this was for John and the message it gave to the general public! A young person took charge of his own destiny. John was not only the first blind student to submit legislation to change a state law, but the first high school student I have known to do so. Senator Brandland said, "If you ever have another student that is interested in submitting legislation, I would be happy to work with them." John built an important bridge that helped him with his future, and he realized his dream.
John had a dream, but he didn't just dream, he became a "reality dreamer." By the way, John was one of those students who goofed around after he graduated from high school while he tried to find himself. He also loves music (percussion to be exact) and recently was accepted into the Berkley School of Music. As Paul Harvey would say, "Now you know the rest of the story!"
This is just one of many stories I could share with you about students gaining confidence and acting on their dreams. Our students have gotten involved in building a greenhouse, running our espresso service, working with staff in a coffee roasting business, providing volunteer services to the community, as well as powerlifting and downhill skiing. The list could go on and on. These activities are not designed to train someone for a specific trade or sport, but to help students develop the "I can" attitude that will help them the rest of their lives.
You may have picked up on the theme that success is not just based upon academics, but upon attitudes, expectations, and a way of life. It's helping children believe in themselves along with helping parents understand the capabilities of their children. It is really important for parents and educators to learn how to do with, and not for, a blind or visually impaired child. It takes time, but in the long run your child will be the winner because of your actions. However, when planting those seeds and nurturing your child, don't forget that he or she is a child first. Sometimes kids act goofy and do foolish things; this is part of growing up. Don't try to make little adults out of children. We all grow up too fast!
It truly does take a village to raise a child. When a child is blind the village becomes a little larger in pulling together the right people and the right resources. You are all part of that larger village. Glean what you can from those around you, for they are part of the expanded village that can help you and your child succeed. The NFB is one of many resources that you need to access in order to help your child move down the course that can lead to success. Helen Keller said, "Alone we can do so little, together we can do so much!" I really like this quote because it speaks of partnerships and gets us dreaming about pulling people together toward a common goal and mission.
A number of years ago, we brought stakeholders together to discuss the future direction of the WSSB. As you can imagine, words that we kept hearing were, independence, success, positive attitudes, self-reliance/self-determination, and self-esteem. Some of the questions people asked were things like, How do we know we are reaching our goals? How do we measure success?
What came out of these important planning sessions were program changes on the WSSB campus. They included expansion of outreach services and the development of Braille production services, a statewide instructional resource center, statewide assistive technology services, community work experience opportunities, career development programs, 24-hour IEP programs, self-medication training, and accessible online learning options. Probably the most important changes were helping everyone realize the importance of setting realistic high expectations, assisting students to build self-confidence and self-esteem, and developing the skills students needed to succeed. This great experiment could not have been accomplished without the partnerships of hundreds of people throughout our state and country. We aren't yet where we would like to be, and we probably will never reach our ultimate goal, but I believe we have been moving down the right course and will continue to learn and improve with everyone's input.
Please continue to dream, but also encourage your children to be reality dreamers--those who work hard at making their dreams come true. Don't forget that children who are blind are children first. They need to have great childhood experiences that will help shape who they are and who they will become.
by James Gashel
Reprinted from the Braille Monitor, August-September 2011
From the Editor: On Friday, July 8, Jim Gashel, secretary of the National Federation of the Blind and chair of its Bolotin Award selection committee, made the 2011 Bolotin Award presentations. The Bolotin Awards are given each year in memory of Dr. Jacob Bolotin, a blind physician who worked in Chicago in the first decades of the twentieth century.
Jim Gashel: This afternoon it is my privilege and honor on behalf of the National Federation of the Blind to present the 2011 Dr. Jacob Bolotin Awards to four recipients who have distinguished themselves as leaders of excellence in the field of service to the blind in the United States. As the first person born blind, then to practice medicine, it wouldn't be an understatement to say that Dr. Jacob Bolotin was a pioneer. That is exactly what he was, and that's why we remember him today. As chairman of the Bolotin Awards Committee I can tell you that we work very hard to find recipients and potential recipients who demonstrate pioneering spirit and pioneering vision in their programs and activities along with inventiveness and creativity. These are the principal factors that give continuing life to the legacy of Dr. Jacob Bolotin. According to our published criteria, the Bolotin Awards may be conferred upon organizations or upon blind or sighted individuals. However, regardless of whether we're talking about an individual or an organization, the entity must have demonstrated a record of performance or service to advance opportunities for the blind consistent with the test of excellence which I have mentioned.
Funding for the Dr. Jacob Bolotin Awards is provided through the Alfred and Rosalind Pearlman Trust, which was made possible through a bequest to the Santa Barbara Foundation and to the National Federation of the Blind by Dr. Bolotin's niece, Rosalind Pearlman.
This year we are awarding a total of fifty thousand dollars to two individuals and two organizations. Each award includes an amount of money and a commemorative plaque with a medallion suspended above it. Here's the text that appears on the plaque: "Presented to [name of recipient] by the National Federation of the Blind and the Santa Barbara Foundation, July 2011." Now for the medallion; text actually appears on both sides. The text on the obverse side reads: "The Dr. Jacob Bolotin Award." Immediately below that is the logo of the National Federation of the Blind. Below the logo it says, "Celebrating achievement, creating opportunity." On the reverse side of the medallion is a bust of Dr. Bolotin. On the left and right of the bust are the years of his birth and death, 1888 and 1924. His name is at the top, and below that it says, "Celebrating his life. The Alfred and Rosalind Pearlman Trust."
Now for the 2011 Jacob Bolotin Awards.
For our first recipient, representing the category of sighted individuals whose demonstrated performance and continuing service merit the Dr. Jacob Bolotin Award, we selected an award winner who will be known to anyone with blindness and diabetes. He is Jerry Munden, for an award of ten thousand dollars. This award is given in recognition of Jerry Munden's pioneering work, responding to the needs of blind diabetics with accessible blood glucose monitoring technology.
Jerry Munden first became known to the National Federation of the Blind as vice president of business development at Prodigy Diabetes Care in Charlotte, North Carolina. Several years ago at the convention of the National Federation of the Blind we passed a resolution calling upon the manufacturers of glucose monitoring equipment to make their devices accessible for independent use by blind diabetics. Jerry Munden heard our voice, and he made our cause his cause. Prodigy Diabetes Care led the way in creating the world's first accessible technology for use by diabetics. The product known as Prodigy Voice Care first came on the market in 2008. It is a fully accessible blood glucose monitoring technology. When you think of independence, when you think of self-management, when you think of dignity, think of Jerry Munden. Here to receive the award is Jerry Munden.
Jerry Munden: I was really quite humbled and honored when I got a call from Jim Gashel recently, and he told me of the committee's decision to select me for this prestigious award. In my work with Prodigy, I am privileged to work on a regular basis with over seven hundred blind association leaders across America. Oftentimes we talk about the needs of the blind and vision impaired, and then we do something about them. I'm privileged to have many friends with the Blinded Veterans Association. Oftentimes they've given their eyesight in fighting for our freedom. What a privilege for me when I am able to tell them and others about new accessible products that will enable them to achieve greater independence.
At the NFB convention last year Dr. Maurer announced NFB Resolution 2010-21, asking manufacturing companies to make products more accessible. Prodigy listened, and we're actively pursuing, not only what Jim talked about with the voice meter, but other new accessible products that we're working on as well. One of these is the Voice Rx which will enable distribution of a talking pill bottle at no extra cost to people who get their mail-order pharmacy products filled using Voice Rx. [Applause]
I'm blessed to have work that I am passionate about, which allows me to make many new friends and bring new accessible products to market and to receive this prestigious award. Continuing in the footsteps of Dr. Bolotin is an honor indeed. Again, I am very grateful to receive this award, and as always I am here to help. Thank you very much.
Jim Gashel: Now for our second recipient. Representing the blind individual category, we recognize Dr. Cary Supalo with an award of ten thousand dollars. [Applause.] Dr. Supalo is a member of a very select club of professional blind chemists. He's also a member of the National Federation of the Blind. While neither of these achievements would be enough to win him the Dr. Jacob Bolotin Award in and of itself, there are other things about Dr. Supalo that do. Rather than simply being satisfied with conducting his experiments with the assistance of sighted students, Cary Supalo decided to develop the tools needed in chemistry so that he could do his own measurements without sight. Having done so, he won a National Science Foundation award to develop his measurement tools and to field test them in eleven public high schools and five schools for the blind across the United States. [Applause]
Based on his research and his experience with these measurement tools, Dr. Supalo found that using these tools makes independent laboratory participation more possible for blind students, gives them a more positive view of scientific study, and makes them more likely to pursue careers in science. When you think of inventiveness, creativity, pioneering spirit, pioneering vision, not to mention giving back, think of our blind chemist, Dr. Cary Supalo. [Applause]
Cary Supalo: Access to science, technology, engineering, and mathematics (STEM) courses is a priority of the blind. We need to empower the blind in these technical fields. Through the work of the Independent Laboratory Access for the Blind (ILAB) project at Penn State University, we successfully developed and field-tested what we call the JAWS Logger Pro Interface, thus making accessible more than two hundred science probes sold and distributed by Vernier Software and Technology (now Independent Science). It is the mission of ILAB and Independent Science to develop scientific instrumentation that is fully accessible to empower all blind students in laboratory science classes. The course content consists of chemistry, physics, biology, and even earth science. Through this effort we are empowering blind students as well as science teachers to allow full integration of the blind into science, technology, engineering, and mathematics, thus increasing their interest in STEM professions. Thank you very much.
The Braille Challenge
Jim Gashel: Our third recipient, representing the organizational program of excellence category, we recognize for the Dr. Jacob Bolotin Award this year the Braille Challenge, with an award of ten thousand dollars. The Braille Challenge started in 2000 as a Braille outreach program of somewhat modest size (if anything is of modest size in southern California). It has quickly grown to attract blind youth participants from all over the United States and Canada, building on the experience of and sharing values with the NFB's Braille Readers Are Leaders Program. Participants in the Braille Challenge compete at five levels, beginning with the apprentice level for first and second graders, going on to the sophomores and juniors, and to the junior varsity and finally the varsity level for high school students. The skills tested include reading comprehension, speed reading and accuracy, writing, proofreading, spelling, and reading charts and graphs. The competition begins at the regional level and ends at the Braille Institute in Los Angeles.
We have many, many glowing accounts of what the experience at all of these levels has meant to blind students. When you think of creative programs of pioneering vision to promote Braille education for blind youth, think of the Braille Challenge. Here to accept the award is Les Stocker, president of the Braille Institute of America in Los Angeles. [Applause]
Les Stocker: Thank you, Mr. Gashel, Dr. Maurer, and NFB leadership and delegates. It is a distinct honor to receive this award on behalf of countless people who make this program possible and organizations that have joined with us, including the NFB. This year we had thirty-four regional challenges around North America, all produced by separate organizations that have become a huge team. I'm reminded of the sagacity of Casey Stengel, who once defined management as "getting rewards for other people's home runs." That's kind of what I do at the Braille Institute as president--I get to receive the awards from the work of all these other people.
Braille Challenge continues to grow. This year we attracted almost sixteen hundred contestants from thirty-six states and Canadian provinces. We're especially appreciative of the partnership with technologies, specifically Freedom Scientific, providing some really cool prizes for the winners. It points to technology as being associated with Braille--not Braille looking backward, but Braille looking forward. Braille literacy is a key to technology. I believe that literacy, whether sighted or blind, is the key to the future for any child growing up in America. We are especially appreciative of the partnership that we have with NFB, not only promoting Braille literacy, but helping make it happen. It's a point of action. There are lots of things coming out of the knowledge that's being generated. On behalf of so many children, families, and others, I thank you very much. [Applause]
Professional Development and Research Institute
Jim Gashel: We started with fifty thousand dollars, didn't we? We've given away thirty thousand, right? This is the final award, an award of twenty thousand dollars. Chosen to receive it is the Professional Development and Research Institute at Louisiana Tech University. Remember only a few years ago when having normal sight was considered essential to receive professional certification to teach the blind? Blind people were systematically excluded from the rewarding profession of serving the blind. Remember when all of the research done to understand and document the problems of the blind and develop solutions that would advance the blind was conducted by sighted researchers? Remember when the number of certified blind orientation and mobility instructors in the United States was zero because the certification system withheld its approval from blind people? They said that they didn't discriminate against the blind, but they did say that you had to be able to observe students from a considerable distance in order to teach them. There was no discrimination; we just had to be able to see, that was all. The problem was that the blind couldn't see. It wasn't discrimination. All of this has been documented in our history.
That was until the Professional Development and Research Institute on Blindness came into being to tear down the barriers of ignorance and discrimination and to throw open the doors of opportunity forever. Blind people can now teach the blind. [Applause] Finally there was a graduate program, not just willing to admit blind students, but actually going out and recruiting blind students to participate. Now in the beginning of its second decade, the Institute administers three master’s degree programs: one in orientation and mobility and two in education--curriculum development and education of blind children (none of this "vision programs"). The Critical Concerns in Blindness book series is one of the best-known components of the Institute's research publications, along with the Journal of Blindness Innovation and Research published in partnership with the National Federation of the Blind.
In the beginning of its second decade, the Institute has clearly achieved a place of recognition and respect in the field of work with the blind. Today we bestow on the Institute a place of honor as well. When you think of innovation and tearing down barriers with pioneering spirit and pioneering vision, think of the Professional Development and Research Institute on Blindness. Here to accept the award is Dr. Edward Bell, executive director. [Applause]
Edward Bell: Thank you Dr. Maurer, Mr. Gashel, the Bolotin Committee, and all my Federation family. Thank you very much. On the stage up here with me are Dr. Ruby Ryles, coordinator of the teachers of blind students program; Darick Williamson, who helps coordinate the orientation and mobility program; Deja Powell, who administers a master’s certification in literary Braille; Natalia Mino, who assists in research and development of assessments; and Dianne Seilhan, administrative assistant and right hand, without whom no work would be done. Together the six of us constitute the staff of the Institute on Blindness. Through the continued support of the Louisiana Center for the Blind, we remain the only university program in the country that embodies the spirit and philosophy of the National Federation of the Blind. And with that spirit and philosophy we'll continue to move forward and change what it means to be blind in education and rehabilitation of the blind in this country.
On a personal note, I need to say "Hi" to my beautiful wife Maria and my two beautiful children, Victoria and Samantha, who are at home in Ruston, watching this on the Internet. What a wonderful system we have here!
We have accomplished a lot of work in the last ten years. Even more remains to be done. We need to help do the research that helps tear down those barriers, helps us to deepen and broaden our understanding of blindness and the discrimination against the blind, to change those processes for the better in this country. We need all of your support, your information, your participation in our research. Most of all we need your continued support and guidance in the work that we do. Thank you very much to all of you for this honor. [Applause]
by Gary Wunder
Reprinted from the Braille Monitor, August-September 2011.
From the Editor: The presentation of the NFB Scholarships is one of the highlights of the annual National Federation of the Blind convention. Federationists are thrilled to meet our winners and to learn about their achievements and plans. Many of our former winners have taken on leading roles in the Federation and its programs.
At the meeting of the NFB board of directors, the thirty 2011 NFB scholarship winners came to the microphone and introduced themselves to the Federation. Three of the winners were tenBroek Fellows, receiving their second NFB scholarship. Each speaker was announced by Patti Gregory-Chang, who chaired the 2011 NFB Scholarship Committee. Patti listed each winner's home and school state after his or her name.
Yasen Angelov, Florida, Florida: Good morning, everybody. I currently reside in St. Petersburg, Florida. I have been a member of the National Federation of the Blind for the last seven years. What brought me to this organization was the enormous resources about blindness. I have congenital glaucoma, and the fact that I am blind didn't stop me from becoming the top student in my class. I was nominated as an outstanding accounting student by the faculty at USF [University of South Florida], St. Pete. I was also awarded a scholarship by the CPA scholarship fund at the Community Foundation of Tampa Bay. During the last tax season I was a volunteer with the IRS VISTA program, helping low-income people file their income tax forms for free. My goal is not only to become a CPA and earn big money, but also to support NFB. I know how important NFB is for all the blind people in the United States. Thank you.
Jessica Beecham, Tennessee, Tennessee: A wise man once said that the creative and dedicated minority almost always changes the world. Since the 1940s the National Federation of the Blind has embodied the truth of this statement. Standing before you today, a member of the scholarship class full of future leaders in law, education, human services, and so much more, I can truly say it is respectable to be blind. We this week are sponges here to soak up the knowledge from our mentors of leadership, advocacy, and success. Thank you for giving me the opportunity to take the lessons from this week and transform them into a lifetime of leadership in the movement to change what it means to be blind.
Mary Billington, New York, Massachusetts: Good morning, everybody. My name is Mary Billington. I'm from Brooklyn, New York. In December I graduated from Barnard College of Columbia University, where I got a degree in economics. At Barnard I also received my New York state certificate in childhood education. I currently work at an education advocacy group, where I advocate on behalf of students with disabilities as well as students who are English-language learners in the New York City public school system. In my free time I serve as research assistant to the president of Barnard College--yes, my free time. In the fall I will somewhat reluctantly leave my hometown of New York and travel to Boston to begin a master's program in education policy at Harvard University. Thank you.
David Bouchard, Mississippi, Tennessee: Good morning. I'm David Bouchard. I am from Starkville, Mississippi. I am a recent graduate of the Louisiana Center for the Blind, and I'm also a Braille instructor and summer counselor for Blind Industries and Services of Maryland's Independence 2011. This August I will be attending Sewanee, the University of the South, in Sewanee, Tennessee. I plan to receive my master's degree in orientation and mobility from Louisiana Tech. I wish to use this degree to help change policies and help instruct blind children and adults to allow them to receive quality training in structured discovery. I would like to thank everyone for giving me this fantastic opportunity. Without you this would not be possible. Thank you.
Christine Daniels, Colorado, Colorado: Thank you very much for having me here. It's an honor. I am also a recent graduate--well last year--from the Colorado Center for the Blind. The skills were very pivotal for helping me start my journey as a blind person. I am currently a second-year PhD student at the University of Denver, where I am studying cellular and molecular biophysics. My current research is with the Eleanor Roosevelt Institute for aging and aging-related diseases. We are studying Lou Gehrig's, Huntington's, Parkinson's, and Alzheimer's specifically. I'm also a mom of two children, and I thank you for this opportunity.
Roberto Diaz, Connecticut, Connecticut: Good morning. Let me begin by saying that I'd like to reiterate a thought I had yesterday when reflecting on the enormousness of this experience. I cannot express or overstate how massive this is--when you come into contact with a group of people, a body such as yourselves that collectively represents the absolute magnificence of what humanity can bring. I'm a former Marine. I was a firefighter for twenty-two-and-a-half years before a line-of-duty injury cost me my eyesight. I volunteer at a camp for children who are the survivors of traumatic burn injuries, and they also include from time to time children who were blinded by their injuries or from birth. I was the counselor in that capacity as well as the director of archery. Last year I became the first legally blind state-certified archery instructor in Connecticut. I have a wife and a fourteen-year-old daughter. I plan to teach American history with the focus on the American Constitution to inner-city youth who are at risk or in dire need of staying out of the system. I would like to thank you from the bottom of my heart, and I thank you from my family, and semper fidelis!
Aleeha Dudley, Ohio, Ohio: Good morning, everybody. I'd like to thank you so much for this humungous opportunity. I plan to take this opportunity and run with it. I want to become more active in this organization. Some of you might know I want to be a veterinarian. I've always been determined to be a veterinarian, but I just got more determined. I was at a vet's office doing an interview, and I sat down with him, and he said, "I don't want you to pursue this goal. You can't do this; that would be like me blindfolding myself and walking through a minefield." I was angry. I was not a happy girl. I walked out of that office, and I am determined now with the technology and resources available that I will become a veterinarian because it's about time that someone with a visual impairment became a veterinarian and showed the public that we can do this.
Heather Edwards, South Carolina, South Carolina: Good morning. I hope you are all having a good convention. My name is Heather Edwards, and this fall I will be a junior at Coastal Carolina University in South Carolina, where I am studying psychology and minoring in Spanish and women and gender studies. I currently work as an early interventionist with children with Down syndrome, autism, and intellectual disabilities to help them get a jump start before they enter kindergarten. I hope to transition this to work in the field of disability coordinator to help children with disabilities transition from living with their parents and going to high school to being independent and going to college, because I didn't have such a great disability coordinator. I would like to take that experience and help someone else so that I make sure that they get the help they need. Thank you.
Christopher Fountain, Virginia, Virginia: Good morning. This morning I would like to share a lesson that I've learned throughout my years, and I can best relate it to the poem "The Road Not Taken" by Robert Frost. As you know, at the end of the poem the hiker takes the path less traveled. I relate to this because, like the hiker, I believe I took the path less traveled. Now this path has been filled with sorrow and happiness, failure and triumph. I've had opportunities to get off this trail, but I've chosen to stay on it. Through my journey I've earned the rank of Eagle Scout, learned to read Braille, and learned how to use a white cane. These have been very helpful. One day I stopped, took a look around, and noticed that the path is very different than when I started. The path was a little better defined, and there were little, warm lights along the trail, not yet bright, but just bright enough to suggest that here is a little help. So out of curiosity I examined one of these lamps, and on the bottom was etched the National Federation of the Blind and a whole bunch of names. As a good Scout and a good person, I decided to scratch my name along with the others and take care of this trail and these lamps in the hope that like those before me in the NFB I could be a guiding light for those who follow. Thank you.
Brenton Fuchs, Connecticut, District of Columbia: Salve omnes. My name is Brenton Fuchs, and I am currently attending American University, where I hope to receive a degree in marketing. I know it's no great surprise that employers continually underestimate us as blind people and don't think we can function as well as our sighted counterparts and work as efficiently as they do. However, what's not as readily apparent is that, not only do employers continually underestimate us, but they also think that hiring a blind person would incur additional expenses on their behalf and require many additional accommodations to help us perform at our full potential. This fact became apparent to me while working at a nonprofit organization last summer. To that end I hope to use the skills in marketing that I acquire in college and that I am acquiring currently on the job at MetLife in New York this summer to market us as a people, as an organization, and as a group, to the rest of the nation and to potential employers. I want to let them know that, yes, we can in fact function just as well as our sighted counterparts, and to let them know that we indeed do not need thousands of dollars worth of equipment to successfully complete a job but have acquired a set of skills throughout our lives to enable us to accomplish this goal. Thank you.
Diane Graves, Indiana, Indiana, a tenBroek Fellow: Greetings, fellow Federationists. I am honored to be a recipient of the 2011 scholarship and doubly honored to be elected as a tenBroek Fellow. I have been affiliated with this great Federation family since I joined in 1995, which makes this gift especially meaningful because it is like receiving a vote of confidence from my family. I am currently employed with the Indiana Civil Rights Commission as a mediator. I have served the Civil Rights Commission in various capacities and have served as a mediator for about eight years now. Several years ago I decided I wanted to play a larger role in the administration of the civil rights and other social services laws. Civil rights has always been my passion, so I decided to go back to school and see if I could get the credentials I needed to make that happen. I am currently enrolled at Kaplan University, working towards a bachelor's in organizational communication, which I hope to have completed by March of 2012. I will then be going on to receive a master's degree in sociology, and hopefully after that I will be going on to receive a doctorate in sociology as well. I want to thank all of you from the bottom of my heart.
Michelle Hackman, New York, Connecticut: Hi, everyone. My name is Michelle. I'm a recent high school graduate and first-time conventioneer. I am really enjoying fencing with all of you guys with our canes. I'm going to be starting as a freshman at Yale this fall. I'll be majoring in behavioral neuroscience and political science and doing a couple of things that people have told me repeatedly throughout my life that I can't do. I want to be a staff reporter where I can chase people down with a microphone, and I'm going to be working at a brain-imaging lab come September. Professionally my real interest is in technology and human behavior, something you guys are very familiar with: cell phone addiction and Internet addiction. I hope to become a behavioral researcher and policymaker in that area; so, if any of you have an interest in that, the next time we fence, please feel free to say, "Hello." Thank you.
Shafeka Hashash, New Jersey, New York: Hi, everyone. I can't express how thankful I am to actually be a scholarship winner this year. I will be attending NYU this fall as a freshman studying political science and international studies, and I would then like to transition into law school. My ultimate career goal is to work in the United Nations. In working in the United Nations, I would love to create an international network between the U.S. and the Middle East to spread disability rights and the NFB philosophy of what it means to be blind in America in countries where being blind is frowned upon and hidden away. So my ultimate goal is to create this network of advocacy and learning together.
Carry Joanis, New York, New York: Hello, everyone. My name is Carry Joanis. I just want to say thank you for this opportunity as one of the scholarship winners. I am finishing a master's degree in business administration with a co-major in finance and entrepreneurship. I will be starting a postgraduate program in leadership in the fall. I've been hearing a lot about the NFB since '08, which is the same year I first came to the United States. I didn't know anything about the NFB before. I left my country on March 31, came here, didn't have any skills, and did not speak English. I landed in Denver, Colorado. I went to the Colorado Center for the Blind, where I received living skills and learned English at the same time. After that I moved to Rochester, New York, and got a scholarship to start a program at the Rochester Institute of Technology. It's a real pleasure for me to be selected. My dream is as an entrepreneur to open the possibility for other blind people to be employed. I am very thankful to be here, and I identify my own philosophy with that of the NFB. Thank you very much.
Kathleen (Kate) Katulak, New York, New York: Hi, everyone. I am a graduate student at Teachers College of Columbia University. When people ask me why I want to become a teacher of the blind, I often think back to some of my own experiences--a time when I went blind and did not receive the services that I deserved. I think back to interviews and instances when I received discrimination and many people who told me that I could not ... and would never ... Once I got past the negativity, I said to all of them, "What is stopping me now?" Because it certainly wasn't my blindness. I want to make a difference in the lives of my students so that they can make a difference in the way that many people view blindness. I feel that I've had many opportunities in my life. I graduated with my undergraduate degree in psychology and got a wonderful job at Yale University working in research. Now I'm a graduate student, and I plan to go on and do wonderful things. If anything, going blind empowered and encouraged me and enabled me to become the person I am. I thank all of you, and I hope you have a wonderful convention.
Catherine Lei, California, New Jersey: Good morning, everyone. My name is Catherine Lei from Elk Grove, California. I am deeply honored for this great privilege of being here before you today as well as at this, my first-ever convention. These first few days I have already met so many inspiring people. I've had so many new experiences. I've learned so much. As this week progresses, I hope to continue learning all that you have to teach me. I just this year graduated from high school, and this fall I will be a freshman at Princeton University. I intend to study physics and then go on to law school in order to blend the field of science and law to become a patent attorney. Thank you.
Ma'ayan Malter, Illinois, Illinois: Hey, NFB! So this is my first convention, and I am loving it. I just graduated from high school a couple of weeks ago, and this fall I will be a freshman at the University of Chicago, where I plan to study economics. I want to study economics so that I can learn to make the economy work for everyone, especially for people with disabilities, because subminimum wages are not acceptable for anyone. I am also very interested in economic research. A project I'd like to tackle in the future is to prove that laws like the ADA and social services are actually beneficial to the entire society and not just those they directly affect. So if anyone is interested in talking about anything, I'd love to talk to all of you, and I just want to thank the board for letting me be here this week.
Daniel Martinez, Texas, Texas: Hello, Federationists. It is an honor to be a part of the 2011 scholarship class. I am currently a sophomore at the University of Texas at Brownsville. I am studying to receive a bachelor of arts in education so that I can then attend Louisiana Tech and receive a master's as a teacher of blind students. I hope one day to be an NFB distinguished educator. This summer I participated in three internships. I've gotten the opportunity to teach eight elementary students and two teachers of the blind. Thank you very much.
Ryan McBee, Oregon, Oregon: Hello and good morning. My name is Ryan McBee. I am a sophomore at Western Oregon University in Monmouth, Oregon. I am majoring in political science and minoring in communications. My goal is to be an elected official or political consultant. My goal is to work as an elected official for blind individuals, so that subminimum wage deal we are all talking about--I would make sure that it's dead on arrival when it came to the floor of the House or Senate. This subminimum wage bill is not acceptable, and as an elected official I would like to stop that bill and many others. Please give me five years, because in 2016 I will be eligible to run. Thank you.
Julie McGinnity, Missouri, Missouri: Hello, everyone. I am going to be a junior next fall at Webster University. I am studying vocal performance and German. I am a musician. I am a performer, and I want to get my master's one day and possibly teach at a college. I would like to teach Braille music, because I believe it is the most undertaught form of Braille that there is. I would also like to work with blind musicians on performing techniques, and I would just like to inspire people through song, because I believe that, not only can scientists and mathematicians and people who invent things inspire people, but music inspires as well, and you can learn so much from music. I would like to prove to all that blind people can be professionals and can be accepted in the field of music and performance as well.
Terence Meehan, California, California: Good morning. I would like to thank everyone for the opportunity to be here. It has been a wonderful convention. My name is Terry Meehan. I am currently pursuing an MD and a PhD from the University of California at Davis. My PhD work is going to focus on the neurodegenerative causes of various diseases that cause disability in children. While I was applying to medical school, it was crucial for me to present my visual impairment, not as a weakness, but as a strength, as a source of empathy and encouragement and a way to relate to patients in a unique way. As a physician I intend to treat patients in a clinical setting, children with disabilities, in a way that encourages them to take control of their lives and view the strengths that their disability has afforded them. Thank you.
Sylvia Modesitt, Missouri, Missouri: Hello, everyone. I'm Sylvia from Missouri, and I am thrilled to be a freshman this fall at William Jewell College, where I will be studying molecular biology in the Oxford honors program. After that I intend to earn my PhD and conduct research while teaching at the college level. I could talk for quite a while on the subject, I'm sure, but, keeping it pretty short, I'll just say this: I've been a member of the NFB for eight years now. The main thing it has taught me is this: though we all have things that handicap us, it is up to us whether we allow those things to handicap our dreams. Studying the sciences has always been my dream ever since I can remember, and I will never let my blindness hinder that. Thank you.
Justin Salisbury, Connecticut, North Carolina: I am completing a degree in mathematics and also quantitative economics at East Carolina University. I hope to go on to a PhD in economics and teach at the university level. I am super excited to be a mentor at the Youth Slam this summer. I want to tell you a little bit about my experience with finding the Federation. Loss is something I grew up thinking was something to be mourned. When I had a friend die this fall, I was mourning that, and I found myself in a good southern Black nondenominational church for what I thought was going to be a funeral, but they called it a home-going ceremony. They were singing and screaming. They had a band. They had a choir for two-and-a-half hours celebrating her life. It was a very positive experience, and I didn't cry in the entire thing. I could not believe it; they had such a positive philosophy. When I was a senior in high school, I applied for every single scholarship I could find, and I got a scholarship from a blindness organization. They took me to their national convention. They had a sighted person meet me at the airport and take me to the hotel. They took care of me. They didn't really let me out there on my own. They told me about the Federation. They said, "The Federation is this really extremist, militant group, and they are going to plan the next 9/11. Just be ready for them." I was really kind of scared by that. I knew that I had applied for a national scholarship from the NFB of Connecticut, and I won it. So I thought, I'm just going to put on this mental hard hat and not let their philosophy affect me. I'm just going to take my money and run. Well, I got there, and it was a whole bunch of happy, positive people. I said, "Wow, this is not what I was expecting." So I'm thinking, extremist militant? Where is that coming from? Then Parnell Diggs gave his banquet speech. I understood where the militant came from, and I loved it. I loved it. So I just kept my involvement with the NFB, and I've loved it ever since. Keep it up, guys.
Kyle Shachmut, Massachusetts, Massachusetts, a tenBroek Fellow: Good morning. Thank you to Dr. Maurer, the board, and the scholarship committee for bringing us here. Thank you to all of you who raised the funds for all of these programs that bring us here. It is very much appreciated. I study educational technology at Boston University. I love what I do. I get to work with some outstanding teachers to help make sure that they give great technology experiences and solutions to their students, not just blind students, but all students. Then I get to work with them to make sure that the solutions are accessible. I also get to work with universities to make sure that projects they roll out to all their students are accessible and usable by everybody and that they select good technology. I absolutely love what I do. I hope to get to meet many of you this week, and thank you very much.
Amber Sherrard, Louisiana, Louisiana: Hello, everyone. My life changed tremendously at age fifteen when I joined the National Federation of the Blind. At the time I did not consider myself to be blind even though I used many alternative techniques every day. I began to associate and get to know a lot of the members here at the National Federation of the Blind, and I saw how their lives were so positive, how they were all so confident and independent. I craved the freedom they all had. I wanted more of it. I strove to be just like them. Later I made the decision to attend a national training center. I went to the Louisiana Center for the Blind, and there I learned a positive attitude about blindness. It changed my life forever. Now that I have completed my adult training, I will be going to Louisiana Tech University to study nutrition and dietetics. My goal is to be a registered dietician and to help people eat well and live long. I would like to thank the scholarship committee for giving me such a wonderful opportunity. This is an experience I will cherish forever and never forget.
Sandra Sommers, Ohio, Ohio: I am a nontraditional student. I am basically a soccer mom from Ohio. I have a seventeen-year-old, a fifteen-year-old, and a thirteen-year-old, and my husband is my hero this week, because he is home alone with them. Five years ago I was handed a piece of paper by my ophthalmologist that said I had RP [retinitis pigmentosa]. I didn't know what it was. He said nothing to me but handed me the piece of paper. I went home and Googled it, and imagine my surprise! Then I realized that all three of my kids could have it. So I ignored it for a couple of years, thinking it would go away, but it didn't. My vision continued to deteriorate. I came to realize that I couldn't live the way I was living. I started making some phone calls, looking for some resources, and I found someone who would listen to me. Most people were telling me that I could no longer cook, I could no longer clean, I could no longer care for my family, or I would never have a job again. Even my state rehab counselor told me that nothing would ever happen again; it was time to file for disability. I finally got hold of Barbara Pierce from the NFB, and it changed my life. I had a BA from before having children--time to refresh my skills. I am now working on a physical therapy degree in between making peanut butter and jelly sandwiches. I'm thrilled to be here, and I'd like to thank the scholarship committee for this opportunity.
Mikaela Stevens, Idaho, Idaho: Standing one very important inch over three feet tall with blindness makes life an adventure. It is not always easy. In fact, when I was younger, I had a hard time accepting my differences. But through a series of trials and growing opportunities, I have learned to rise above and relish life in all its beauty and am committed to helping others do the same. I have attended three Idaho state conventions and two national conventions and have seen the power and impact of the National Federation of the Blind. I look forward to contributing to future conventions and giving back to this organization. To me this scholarship is an opportunity to further challenge myself, improve the cause of equality, and help others rise above and relish life no matter the circumstances.
Kristina Vu, Texas, Texas: Good morning, everybody. This August I am going to be starting my freshman year at Rice University. I am majoring in political science and plan to be a prelaw student. This is my first convention, and I have to say, in the couple of days I've been here, I've learned a lot more than I ever expected to. Unfortunately some of these things were not exactly happy experiences to learn. I found out about the possible authorization of subminimum wages for disabled people, and I learned about the alarming rate of illiteracy among blind students simply because schools refuse to meet their duty to provide lessons in Braille. It's things like these and laws of similar nature that destroy the ideal of equality that America was built on. It's these kinds of laws that have stirred my passion to become a lawyer. Beyond that I also want to be an elected politician because, rather than just arguing about the law, I want to be in those committees shaping it. So, hopefully, ten years from now, or maybe a little later than that, depending on when I can get elected to Congress, I hope you will all vote for me. In the course of the rest of this week, I hope to meet as many of you as I can and learn as much from you as possible. Thank you to the scholarship committee for this opportunity.
Henry Wedler, California, California, a tenBroek Fellow: Good morning, everyone. I first joined the National Federation of the Blind in 2004 when I participated in the first-ever high school Rocket-On! science camp. While there I met blind people who were engineers, mathematicians, chemists, physicists, scientists--which was what I wanted to be. That was so inspiring to see these successful blind people doing well in their careers. My favorite aspect of the National Federation of the Blind, of the people I met at science camp and of all the people I have met at conventions, is that they quite literally exude inspiration, success, and excellence. I think we are all learning as a scholarship class so much from these people. The inspiration that I have gained from the National Federation of the Blind is what allowed me to graduate recently with degrees in chemistry and history from UC/Davis and go on to receive a PhD in theoretical organic chemistry starting in the fall. More important than receiving from the National Federation of the Blind is giving back to it, and I was a mentor at the 2009 Youth Slam. I was a co-instructor at the 2010 Junior Science Academy, and one of my favorite life experiences was this past April when I put on a chemistry camp with the California Association of Blind Students and the National Federation of the Blind of California for ten students who were in high school, much like the Rocket-On! Science Academy. These kids came in terrified of a stove, terrified to touch a pipette, and absolutely mortified at the thought of touching and transferring chemicals as a blind person. They left wanting to be scientists. Thank you for everything, and I say from the bottom of my heart that I am committed to the National Federation of the Blind and all it stands for.
Matthew Yeater, Indiana, Indiana: I'm in awe right now. I was walking through the hallway with Tom Page, my mentor, when I got here Sunday. I am in the process of writing a book, and I am wanting to get in touch with publishers and editors. I need help. He was talking to me about Sharon [Maneki]. Sharon wrote a book on World War II, and I'm fascinated with World War II, especially General George Patton. He was a four-star general who served on the front line. His enemies hated him for it, and his soldiers loved him for it. When I was at the Bosma Center, I was in the process of going to Indiana Bible College, knowing that a blind person before me had failed and did not make it. I met Ron Brown. He invited me to the NFB meeting. I was overwhelmed with what went on. I was so impressed. I was part of the college leadership program. I came here, and I am no longer overwhelmed. I didn't think that I had it in me to do what you guys do. With tears in my eyes I poured out my heart to him, and he encouraged me. What I am doing right now is that I am going to trade my accomplishments for his. Ron, I am going to take advantage of this opportunity to honor you publicly. Thank you for what you do for this organization. Thank you for what you do for Indiana. Thank you for what you have done in my life. I am not comparing him to General George Patton, but I'm not alone, I'm sure, in saying that he wouldn't be what he is if it wasn't for this organization pouring into him the way he poured into me. I need this organization in my life. I need it in my ministry. I need it in my school. Thank you for being there for me.
One of the scholarship winners who introduced himself was Christopher Fountain, a junior marriage and family counseling major at Old Dominion University in Virginia. Chris was a bright and active member of the scholarship class and a promising young leader in the Virginia affiliate. We were shocked and grieved to learn that Chris Fountain died suddenly on Monday evening, July 11, only three days after the close of the convention. The news was devastating to his family, his fellow scholarship winners, and everyone in the Federation family who knew and had come to love him.
At the convention banquet on Friday evening, July 8, Patti Gregory-Chang presented scholarships to each of the winners. Each winner shook hands with President Maurer and with inventor and visionary Ray Kurzweil before assembling across the back of the platform. In addition to his or her NFB scholarship, each winner also received a thousand-dollar check and a plaque from the Kurzweil Foundation; a brand-new knfbReader Mobile, presented by Ray Kurzweil himself; and the latest Kurzweil 1000 Reading System software from Kurzweil Educational Systems.
The final award was the twelve-thousand-dollar Kenneth Jernigan Scholarship sponsored by the American Action Fund for Blind Children and Adults. This year it went to Kyle Shachmut of Massachusetts. After receiving his award he had the chance to address the audience of well-wishers.
Kyle Shachmut: I'd like to thank very much the scholarship committee, Dr. Maurer, and the leaders of the Federation for this award. It's truly a humbling honor. I'd like to thank my wife, Laura. Without her support there's no way I could be involved in this organization the way that I am. She's attending her first convention event tonight, so welcome and thank you. I'd really like to thank my parents. My parents and my siblings never knew the Federation, but they were Federationists. Their philosophy of blindness was truly amazing. They treated me equally with all my siblings. They never let me settle.
I'm here tonight for two reasons. Two years ago I had my first contact with the NFB, and I was really amazed and inspired by the leaders here. Their imagination, their determination--but that is not really what kept me here. What kept me here is finding out that the leaders and the members are really people of action. We in the Federation do things. We do big things. We do important things. We are really changing what it means to be blind.
Earlier this semester my school was trying to enact inaccessible technology across the university. I was inspired by the leaders I have met in the Federation to speak up against that. If you notice, I said "trying." I'm very grateful to say that they've inspired me to help make change in my day-to-day life and for others. So I encourage all of you to do the same, to get involved, follow the great leaders that we have, and make a difference in your world.
The second reason that I'm here is because of the outreach of some great Federationists. Two years ago, when I won a scholarship, I had never had any contact with the NFB. The outreach of my great chapter in Cambridge, Massachusetts, particularly Dr. David Ticchi's constant outreach--he is truly the reason that I'm here and involved in the Federation, so thank you very much to Dr. Ticchi.
This is not an end for me; it is a beginning. I really look forward to continuing to work with the leaders of this organization. I hope to get to meet many of you and to work with you as we continue to change what it means to be blind. Thank you very much. [Applause]
Below is the complete list of 2011 scholarship winners and the awards they received:
$3,000 National Federation of the Blind Scholarships: Mary Margaret Winifred Billington, Christine Daniels, Roberto Diaz, Aleeha Miakell Dudley, Heather Edwards, Brenton Fuchs, Diane Graves (tenBroek Fellow), Michelle Hackman, Shafeka Hashash, Carry Joanis, Catherine Lei, Ma'ayan Shira Malter, Daniel Martinez, Ryan T. McBee, Julie Ann McGinnity, Terence M. Meehan, Sylvia Lane Modesitt, Justin M. Salisbury, Sandra J. Sommers, and Matthew C. Yeater. Christopher Fountain would also have received this scholarship.
$3,000 Charles and Melva T. Owens Memorial Scholarship: Kristina Vu.
$5,000 National Federation of the Blind Scholarships: Yasen Angelov, David Schilling Bouchard, Mikaela Stevens, and Kathleen A. Katulak.
$7,000 National Federation of the Blind Scholarships: Jessica Beecham and Henry "Hoby" Wedler (tenBroek Fellow).
$10,000 Charles and Melva T. Owen Memorial Scholarship: Amber Sherrard.
$12,000 Kenneth Jernigan Scholarship (donated by the American Action Fund for Blind Children and Adults): Kyle Shachmut (tenBroek Fellow).
NFB Digital Technology and Accessibility in Schools Questionnaire
Contact: Clara van Gerven, (410) 659-9314, Ext. 2410
The NFB is seeking information about accessibility barriers in the digital technology used by students, teachers, and administrators in K-12 schools, universities, and colleges in the United States. Teachers, administrators, and parents of blind students are encouraged to complete a questionnaire so that the NFB can learn more about educational technology that either is helping or hindering the learning process for blind students. The NFB will not release identifying information without permission.
CONTEST FOR BRAILLE READERS
Braille Readers Are Leaders Contest
Contact: Natalie Shaheen, (410) 659-9314, Ext. 2293
Contest Period: November 1, 2011, to January 4, 2012
The Braille Readers Are Leaders Contest is a national competition for students who read Braille, kindergarten through twelfth grades, and for all adult Braille readers. The purpose of the program is to promote the joy of reading for pleasure, to promote a pride in Braille as a viable literacy medium equal to print, and to demonstrate the importance of independent reading in the development of Braille literacy skills. Winners in each of six categories will receive cash prizes. To learn more and to register for the contest, visit our website.
NFB Jernigan Institute Teacher Leader Seminar
Contact: Emily Gibbs, (410) 659-9314, Ext. 2407
Dates: January 27-29, 2012
In an effort to foster learning, interaction, and community among teachers, the NFB is hosting the first ever Teacher Leader Seminar. This three-day conference will include learning sessions and Make and Takes, networking with other teachers and professionals, and discussions on best practice and technology. Teachers will have the chance to influence the content of sessions and to lead discussions. Participants are strongly urged to take advantage of social media before, during, and after the seminar to stay in contact with each other and with teachers in the field. The National Federation of the Blind Jernigan Institute is collaborating with the National Organization of Professionals in Blindness Education. The conference is open to teachers of blind students, orientation and mobility instructors, classroom teachers, students in graduate programs, and all other blindness professionals. Registration cost is $100 and includes meals during the program. The first fifty teachers to register will be offered on-site accommodations.
New Voices Institute
Contact: Don Stedman, (919) 834-2636
The New Voices Foundation is an outreach organization based in North Carolina, serving children with severe communication and/or mobility impairments to maximize their learning potential through a program of short-term, intensive, individualized instruction. The goal is inclusion--in all aspects of school, home, and community life--with a transition back into a local school environment. The New Voices Institute provides information about the New Voices model, provides interested organizations with speakers about New Voices programs, and offers consultation and technical assistance to groups planning to serve children with significant communication and mobility challenges. Services are available at no cost or for the cost of travel and accommodations.
Drawing with Your Perkins Brailler: An Activity Guide for Creating Tactile Drawings
by Kim Charlson
This Braille book gives detailed instructions for creating thirty-six tactile drawings using the Perkins Brailler. The book is divided into four sections: basic shapes, animals, holiday drawings, and drawings related to transportation. Children can color the pictures they have made and can experiment with their own original drawings.
Parenting Special Needs Magazine
Contact: Chantai Snellgrove, (772) 532-4423
Parenting Special Needs Magazine is a free online publication that appears six times a year. Articles cover education, socialization, play, future planning, and more for children with disabilities of all kinds.
Magnets and Ladders
Contact: Lisa Busch, [email protected]
This online literary magazine seeks stories, poems, and essays by people with disabilities. Content includes many genres and is not limited to disability themes. Authors may also subscribe to an email list to share work in progress and learn about upcoming writing classes and conferences.
Breath and Shadow: A Journal of Disability Culture and Literature
Breath and Shadow is a quarterly literary journal that explores the disability experience through poetry, essays, fiction, drama, and interviews. All work published is written by people with disabilities. Children and teens are strongly encouraged to submit their writing. Work from anywhere in the U.S. is welcome, but New England authors are given priority.
The Dolly Parton Imagination Library
The American Printing House for the Blind (APH) and the Dollywood Foundation are pleased to announce a partnership that expands Dolly Parton's Imagination Library (DPIL) program to provide accessible books to blind and visually impaired children. With the support of Penguin Group USA, a growing collection of audio files of DPIL titles will be offered as free downloads. Beginning in 2012, APH will produce selected Imagination Library books in print/Braille format. The books will be sent free of charge to two hundred eligible families. Other families will be able to purchase the books at affordable prices. Ms. Parton says, "I am just thrilled we can work together to bring this same joy [of reading] to all children who may have trouble seeing but who have no trouble in believing that all of their dreams can come true."
Anatomy in Clay
2198 W. 15th St., Loveland, CO 80538
Anatomy in Clay produces detailed models for the teaching of anatomy and physiology. Hand-crafted models of the human body are available, as well as models of the horse, dog, chimpanzee, and other vertebrates. The company's trademark is, "The mind cannot forget what the hands have learned."
Getting a Feel for Lunar Craters
by Dr. David Hurd
NASA Lunar Science Institute
This book includes eight tactile illustrations representing aspects of the moon's surface. Explanatory text is available in CD, PDF, and MP3 formats.
Non-24-Hour Sleep-Wake Disorder
According to research, non-24-hour sleep-wake disorder affects about 50 percent of totally blind people. The inability to perceive light causes a disruption of the 24-hour sleep-wake pattern, causing cyclical bouts of nighttime sleeplessness and daytime fatigue. This website includes news updates, personal stories, and information on research studies.
OPEN SOURCE SCREEN READER
NVDA (Nonvisual Desktop Access)
NVDA is a free open source screen reader for the Microsoft Windows operating system. Major features include support for over twenty languages and the ability to run entirely from a USB drive with no installation. NVDA provides output in synthesized speech and is compatible with many Braille displays. It is bundled with eSpeak, a free open source multilingual speech synthesizer.
Talking First Aid Kit
1750 Briell Ave., Unit B6, Ocean, NJ 07712
This company markets first aid kits for treating such emergencies as bleeding, shock, and burns. Each kit has color-coded instruction cards and audio instructions that are available with the push of a button.
SCHOLARSHIPS AND GRANTS
2012 National Federation of the Blind Scholarship Program
Contact: NFB Scholarship Committee, (410) 659-9314, Ext. 2415
Contest Period: November 1, 2011, to March 31, 2012
To recognize achievement by blind scholars, the National Federation of the Blind annually offers blind college students in the United States the opportunity to win one of thirty national scholarships ranging from $3,000 to $12,000. To be eligible, a student must be legally blind and must plan to be enrolled full-time, or working full-time and enrolled part-time, in a program of postsecondary education in the fall semester of 2012. See website for complete details or contact the scholarship office for print materials.
2011 American Grants and Loans Catalog
This catalog contains listings on more than 2,800 financial programs, subsidies, scholarships, grants, and loans offered by the U.S. government plus 2,400 programs funded by private corporations and foundations. Those who purchase the catalog have access to a live database that is updated daily. The catalog is available in print ($149.95) or CD ($69.95) as a searchable PDF file. Note that high school counselors and college financial aid offices may have this catalog.