The National Federation of the Blind Magazine for Parents and Teachers of Blind Children
Vol. 26, No. 3 Fall 2007
Barbara Cheadle, Editor
Copyright © 2007 National Federation of the Blind
information about blindness and children contact:
National Organization of Parents of Blind Children
1800 Johnson Street, Baltimore, MD 21230
(410) 659-9314, ext. 2360
www.nfb.org/nopbc • [email protected] • [email protected]
Vol. 26, No. 3 Fall 2007
NOPBC Wins Literacy Award
“You Don’t Have To…”
by Carrie Gilmer
Of Self-Esteem, Expectations, and Performance
The Skills of Blindness: What Should Students Know and When Should They Know It?
by Lisa Wright
Blind Youths Seek a Future
by Chris Emery
Raising a Blind Child 101: Join the NOPBC!
by Laura Weber
Untangling the Threads:
When a Blind Child has Additional Disabilities
by Rene Harrell
by Jon and Kathy Gabry
It’s Changed! Braille Readers Are Leaders
by Lynsey Scott
Functions of the Cane and the Bottom-Up Approach to O&M for Children
by Joseph Cutter
The Blessing of Your New Grandson: Letter to a Grandmother
by Gary Wunder
Learning to Read Begins at Home
Accessible Reading Materials for Youth: The Evolution of the
National Library Service for the Blind and Physically Handicapped Children’s Collection
Talking Book Program Effectiveness Jeopardized
Access Technology at the NFB
by Anne Taylor
HEROES & ROLE
Blind Student Earns M.D.
by Sharon Cohen
ODDS AND ENDS
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For thousands of parents and friends of blind children, PARENT POWER means membership in the National Organization of Parents of Blind Children. The NOPBC is a national membership organization that provides vital support, encouragement, training, and information about blindness to members and to the broader community. As an affiliate of the National Federation of the Blind, the NOPBC is a bridge that connects families to blind role models and mentors. NOPBC is also a vehicle for expanding resources for parents, changing public attitudes about blindness, and creating greater opportunities for blind and visually impaired kids everywhere. Your NOPBC membership matters. NOPBC is a 501(c)(3) not-for-profit organization.
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Earlier this year, the NOPBC received one of thirty-nine national 2006 James Patterson PageTurner Awards in the amount of $5,000. The James Patterson PageTurner Awards serve to honor libraries, schools, individuals, and organizations that strive greatly to encourage the joy of reading across the United States. The NOPBC received the award for its promotion of leisure and scholastic reading for blind children through its Braille Readers Are Leaders Contest, Braille Reading Pals pre-literacy program, and Free Braille Book Flea Market at the NFB National Convention.
The Braille Readers Are Leaders Contest encourages readers in grades K-12 to read Braille outside of their normal school requirements in order to increase their love of reading and improve their fluency in Braille. The Braille Pals pre-literacy program targets younger children so as to introduce Braille as a medium for information and exploration. Twin Vision® books are used, thus allowing parents to read print while the child touches the Braille on each page. The Commission on Reading calls reading aloud to children “the single most important activity for building the knowledge required for success in reading.” The Free Braille Book Flea Market, in partnership with the UPS Foundation, provides convention attendees the opportunity to browse a vast selection of free Braille books, and then have them packed and sent to their homes free of postage by UPS volunteers.
The connection between literacy and success is undeniable. These programs promote the fact that over 80 percent of employed blind or visually impaired adults report using Braille every day. However, only 10 percent of blind or visually impaired students learn Braille--a statistic that does nothing to curb the 70 percent unemployment rate of working-age blind adults.
You can find information about both of these important programs in this issue. A notice about the upcoming changes to the Braille Readers Are Leaders Contest can be found on page 21, and the Braille Pals program overview and application can be found on page 37.
by Carrie Gilmer
Reprinted from the March 2007 issue of Expectations, the newsletter of the Minnesota Parents of Blind Children, a division of the NFB of Minnesota.
Editor’s Note: Carrie Gilmer is emerging as an energetic and philosophically thoughtful parent leader in the National Organization of Parents of Blind Children. In this editorial, originally titled “The Power of Expectations,” Carrie examines the importance of expectations even in the ordinary events of life that, at the time they occur, may seem inconsequential. Here is Carrie:
Four little words, “You don’t have to…” How much harm can be
done by such a seemingly innocent pardon? After all it is born out of the kindest
and most sympathetic of intentions, right? This thing is unfair for you to do,
so you don’t have to do whatever this is. That levels everything; all is right
with the world.
Recently my son Jordan was excused from an assignment at school with the words, “You don’t have to do it.” His class was to view a film and answer some questions about it from a worksheet as they were viewing the video. It was a spontaneous assignment added to the planned showing of the video because the class had been fidgety and the teacher wanted to ensure that the students focused on the film. Therefore, the worksheet was not available in Braille.
Jordan has enough vision so that when educational videos are played, he is given the option of simultaneously viewing the video on a separate monitor. This way, he can essentially put his face right up to the screen and view what he can--which even then is not much. He can also access regular print (such as that on this worksheet) with magnification, but it is very slow going.
Thinking that it would be too hard for Jordan to try to see the print, write, and keep his face on the screen to view the video visually all at the same time--while also rationalizing that Jordan, (who has a reputation for being very focused) is not a fidgety student--the teacher decided to give Jordan a break.
Her offer: “Everyone is doing this worksheet Jordan, but I know
you pay attention and I know it would be harder for you, so you don’t have to
do it if you don’t want to.”
Jordan, for his part, readily agreed to the logic and gladly accepted the offer that he “didn’t have to do” this.
At first, I thought he had been excused simply because the Braille
was not available. When the teacher explained what occurred (we happened to
have a conference within days of discovering that the incident had happened)
my husband and I indicated to her that we understood and accepted her explanation
that for Jordan to do the assignment from the print copy might have actually
caused him to be less focused on the film. The whole matter was taking up too
much of the conference time and so, after discovering the accurate sequence
of events from the teacher’s side of things, we moved on. It wasn’t until after
we left the conference that I allowed myself to think more deeply about it.
I began to ask myself some questions. Wouldn’t the other students have had to take their eyes off the film as well in order to read and write on the worksheet? Might this have caused the sighted students to also miss something as they concentrated on filling out the worksheet during the film? Granted, they probably would be able to do it faster than Jordan, but still…
I began to consider what Jordan or the teacher might have thought to do if the idea that “he didn’t have to” was totally unthinkable or unacceptable--not even in the realm of possibility. What if, at the start, as the worksheets were being passed, another student had read the questions to Jordan while he typed them into his BrailleNote? It would have taken less than five minutes to do this. Then Jordan could have “kissed” the screen without interfering with his hands reading and writing the refreshable Braille on his BrailleNote. He would then, in fact, have the best opportunity in the entire class to focus on every moment of the film while writing.
What if he had taken the sheet home and simply answered them that evening, while the film was still fresh in his mind? The whole thing was bothering me, and I was pressing Jordan about it because I thought he should be even more bothered by it. After all, he was the one who had been robbed. Robbed, did I say? Yes, robbed!
While the teacher’s purpose for the assignment had merely been a tool to motivate the class to pay better attention to the film, the actual assignment presented quite a learning opportunity. Doing it forced the students to not only focus on the film, but to analyze it and then go further to articulate what they had analyzed as they formulated and wrote the answers. There are a number of rather valuable skills involved. Everyone had a chance to work on those skills, whether they realized it or not, simply by doing the assignment, but not Jordan. He simply passively watched and enjoyed the film. He had no catalyst to prompt him to analyze anything more deeply, and no opportunity to practice articulating his thoughts. He was relieved by a false idea of fairness, but in reality robbed of a learning opportunity.
Beyond that, how did his classmates view Jordan from the perspective of “he doesn’t have to?” This question got to Jordan and he began to appreciate that it was a big deal after all. How can peers view you as an equal if you “don’t have to?” What does it mean when everyone accepts that you “don’t have to” because whatever it is that you don’t have to do is (or appears to be) harder for you?
How often have I met blind children who didn’t have to use their canes, tie their shoes, learn to read Braille, be on time, or in general to be expected to do the same things at the same time as other children of the same age and/or ability? I am sad to say I meet them too often. And what is the consequence? They didn’t have to…so they don’t!
Do you want to raise a blind child who can compete with his or her peers? Then strike the words “you don’t have to” from your vocabulary.
Editor’s Note: Too much self-esteem? Is that possible, especially for blind kids? That was one of the intriguing topics discussed this past summer on <[email protected]>, a listserve sponsored by the National Federation of the Blind for teachers and other interested in the education of blind and visually impaired children. It started when Heather Field of Tennessee posted a mainstream article that challenged our culture’s assumptions about the importance of self-esteem. The article is called “Too Much Self-Esteem Can Be Bad for Your Child,” by Andrew Lam, New America Media, July 10, 2007 (see <http://www.alternet.org/story/56230/>). Ms. Field, a blind woman and former educator from Australia, is a frequent contributor to conversation threads on the NFB listserves for parents (<[email protected]>) and teachers (<[email protected]>). Her wide-ranging knowledge, astute insights, and capacity to think outside the box generate many lively and thoughtful exchanges. Beginning in the same order that the comments are posted, that is, with the most recent response listed first, here is the short, slightly edited conversation thread followed lastly by the article that generated the discussion:
Mindy Lipsey, <[email protected]>
July 12, 2007
Subject: Too Much Self-Esteem Can Be Bad for Your Child
It’s interesting that you mention this. My visually impaired son attended Space Camp last September. The instructors praised the children for accomplishing the same thing sighted children do every week at the camp. I disagreed when they called blind children special and amazing for sitting in a simulator machine, or for rock climbing in the indoor facility.
Let’s be proud of our kids for truly amazing accomplishments. My expectations for my two visually impaired children are obviously much higher than the general public. I guess I’m learning what most of you already know!
H. Field, <[email protected]>
July 12, 2007
Subject: Too Much Self-Esteem Can Be Bad for Your Child
Here’s a very interesting article (see below). All too often our blind children are praised as being marvelous just for doing something that’s far below the performance expectations of their sighted peers. When blind kids know that they aren’t doing what their peers are doing, what a strange effect this must have on their self-concepts.
I do agree with this article, particularly as I come from, and taught for years in, Australia. We Australians shake our heads in disbelief at the trend in American schools, sporting teams, and other cultural institutions where people emphasize self-esteem, and where the goal to make children feel good about themselves is often at the expense of a good strong dose of reality.
This robs children of the opportunity to make accurate decisions
about their abilities, and distorts their understanding of the effort required
from them to achieve their goals. No wonder they are angry, blame others, and
drop out when they find that life in the real world is very hard, and that people
don’t like them, or at least don’t like them long enough to build a relationship.
This generation has to do a lot of work to learn coping skills now that they’re
out of school and dealing with real life and the logical consequences of the
choices they make.
I’d be interested in your thoughts.
Too Much Self-Esteem Can Be Bad for Your Child
by Andrew Lam
New America Media, July 10, 2007
In the age of MySpace, YouTube, and Google Earth, the space between East and West seems to shrink. But in the area of self-perception, especially, there remains a cultural gap that can often be as wide as the ocean.
Take Jeong-Hyun Lim, a twenty-four-year-old business student in Seoul. Popularly known as Funtwo on YouTube, his rock rendition of Pachelbel’s Canon has turned him into a global phenomenon. Lim’s dizzying sweep-picking--sounding and muting notes at breakneck speed--has had some viewers calling him a second Hendrix. His video has been viewed on YouTube twenty-four million times so far.
But Funtwo himself is self-effacing, a baseball cap covering much of his face. No one knew who he was until Virginia Heffernan wrote about him in the New York Times last August. She called his anti-showmanship distinctly Asian, adding that “sometimes an element of flat-out abjection even enters into this act, as though the chief reason to play guitar is to be excoriated by others.”
Anyone in the West with this kind of media spotlight and Internet following would hire an agent and make a CD. But Lim told Heffernan, “I am always thinking that I’m not that good a player and must improve more than now.” In another interview, he rated his playing around fifty or sixty out of one-hundred. Lim’s modesty is reassuringly Asian, echoing the famous Chinese saying: “Who is not satisfied with himself will grow.”
In a classic 1992 study, psychologists Harold Stevenson and James Stigler compared academic skills of elementary school students in Taiwan, China, Japan, and the United States. It showed a yawning gap in self-perception between East and West. Asian students outperformed their American counterparts, but when they were asked to evaluate their performances, American students evaluated themselves significantly higher than those from Asia. “In other words, they combined a lousy performance with a high sense of self-esteem,” noted Nina H. Shokraii, author of School Choice 2000: What’s Happening in the States, in an essay called “The Self-Esteem Fraud.”
Since the eighties, self-esteem has become a movement widely practiced in public schools, based on the belief that academic achievements come with higher self-confidence. Shokraii disputes that self-esteem is necessary for academic success. “For all of its current popularity, however, self-esteem theory threatens to deny children the tools they will need in order to experience true success in school and as adults,” writes Shokraii.
A quarter of a century later, a comprehensive new study released last February from San Diego State University maintains that too much self-regard has resulted in college campuses full of narcissists. In 2006, researchers said, two-thirds of the students had above-average scores on the Narcissistic Personality Inventory evaluation, thirty percent more than when the test was first administered in 1982.
Researchers like San Diego State University professor Jean Twenge, author of Generation Me: Why Today’s Young Americans Are More Confident, worried that narcissists “are more likely to have romantic relationships that are short-lived, at risk for infidelity, lack emotional warmth, and to exhibit game-playing, dishonesty, and over-controlling and violent behaviors.”
by Lisa Wright
Editor’s Note: The following article is a slightly edited version of a speech that was given at the 2006 convention of the National Federation of the Blind of Maryland in Ocean City, Maryland. The topic Mrs. Wright was given was very broad and could have obviously taken up much more time than she had on the agenda. However, in the short time she had, Wright gave an informative overview with enough specifics to be of genuine help to parents and others in her audience. Although she makes many references to curriculum and test requirements that are specific to Maryland, even readers from other states will find this useful as points of comparison with their own state requirements. A former teacher of the visually impaired, Lisa Wright is employed as the statewide blind and visually impaired and low incidence specialist with the Maryland State Department of Education in partnership with the Maryland School for the Blind. For those who would like to contact her for more information about the education of blind children in Maryland, her e-mail address is <[email protected]>; her office phone number is (410) 767-0812 and her fax number is (410) 333-8165. Here’s Lisa Wright:
When I began to think about this topic, I felt overwhelmed. Where do I begin? There are so many things that students need to learn throughout their school career. So, as an educator, I first thought about the purpose of education. Although this includes fostering development and imparting knowledge, the fundamental goal of education is to provide students with knowledge that they can transfer into the real world. In other words, the real purpose of education is to prepare students for life. It is about the knowledge we teach children in particular subjects, the formation of social skills, the growth in thinking and decision-making skills, and in building the capacity to lead a full and independent life.
The core curriculum is what we expect all children to know by the end of each grade level throughout their school career. This includes the traditional subjects of reading, writing, math, science, social studies, physical education, and fine arts. In Maryland, we have a document called the “Voluntary State Curriculum” which defines these skills in the core curriculum.
The National Agenda for Students with Visual Impairments also defines the need for instruction in the Expanded Core Curriculum (see <www.tsbvi.edu/education/corecurric.htm>). These are the disability-specific skills--blindness skills--that children need to access the core curriculum, as well as the functional skills that prepare students for life. These skills need to be systematically taught to blind children. They are not all learned incidentally nor are they part of the core curriculum. They include ten areas:
Dr. Phil Hatlen, superintendent of the Texas School for the Blind and Visually Impaired, states that providing both the core and expanded core curriculum together for students who are blind and visually impaired is essential to give students “the opportunity to be equal and the right to be different.”
I will discuss both the core and expanded core curriculum that blind students need to learn at important transition points in their school career.
The first important transition point is the beginning of a formal school program--kindergarten. Maryland has defined the skills that children need to have in order to be ready to learn. This is the definition the state of Maryland gives in the report, “Children Entering School Ready to Learn”:
“What is ‘ready to learn’? School readiness is the state of early development that enables a child to engage in and benefit from first grade learning.”
Maryland’s “Model for School Readiness” is a curriculum framework that defines early learning skills for what children should know by the end of kindergarten. Each kindergarten teacher in Maryland tracks student progress in the fall and spring to assess each student’s learning. When Maryland began tracking this data in 2002, 49 percent of children were ready to learn. Last year  60 percent of all children started kindergarten “ready to learn.”
Maryland’s data demonstrates that a young child’s learning before they enter formal education is an essential foundation for later school success, and children who attended formal early learning programs performed five percent higher than those that did not.
We all know that parents are a child’s first teacher and can greatly impact a child’s ability to be ready to learn. Parents of blind children need to be aware of the skills their children need and the resources available to them to foster this development.
Maryland’s kindergarten curriculum includes skills in seven areas: social and personal skills, language and literacy, social studies, math, science, the arts, and physical development and health. In each of these areas, blind and visually impaired children need to develop the same skills as other children, but notice how, as I discuss each of these seven areas, they also need structured learning and instruction in both core and expanded core curriculum in order to be “fully ready.”
Social/personal: This includes skills for independently
completing school tasks, classroom jobs, and using classroom materials such
as glue and scissors. Encouraging independence should be stressed at this time.
For example, using verbal directions/prompts will facilitate independence much
more than a hand-over-hand approach. Kindergarteners need social skills of interacting
with other children, such as sharing, taking turns, and playing cooperatively.
Experiences outside of the classroom--in the neighborhood and with community
groups--helps children at this age establish friendships and fosters the growth
of social skills.
Language/literacy: Sighted children need to show understanding of print concepts. For blind and visually impaired children who will learn Braille, this translates into understanding the concept that Braille dots have and convey meaning. It also means the acquisition of book skills, such as knowing how to turn pages and track lines of Braille. Like other children, they also need beginning phonics skills, such as identifying rhyming words and beginning/ending sounds. They also need to demonstrate the ability to comprehend stories read to them, such as recalling details and the sequence of events in the story. By the end of kindergarten, children are expected to identify their own name and read simple words and sentences. They should be able to write the letters of the alphabet, and use invented spelling and some consonant and vowel sounds to write simple stories of several sentences. For the blind and visually impaired child to meet these expectations, early exposure to a Braille-rich environment, Braille books, Braille writing tools such as the Braillewriter and slate/stylus, and systematic Braille instruction are crucial.
Social studies: Children need to have a basic knowledge about communities, jobs, and rules. For blind and visually impaired kindergartners, early orientation and mobility instruction will help them achieve this knowledge as it exposes them to community environments and jobs. Also, exposure to tactile graphics and simple maps as part of this early community-based instruction lays the foundation for more complex map reading skills needed for later grades.
Math: Children are expected to have an understanding of number concepts. They should be able to count objects and identify numerals from 0-10. The Nemeth Braille code should be introduced at this time as kindergarten skills of numerals and combining sets is the foundation of later math skills. Kindergarteners also need to recognize shapes and patterns. For blind and visually impaired kindergartners, real objects should be used to lay the foundation, but tactile graphics introduced early will help transfer the concept of a three-dimensional shape/object to a two-dimensional graphic for later math understanding.
Science: Kindergartners begin to learn to use tools such as clocks, rulers, scales, thermometers, and calculators to measure time, weight, temperature, and size. Equivalent Braille and tactile tools and instruction in their use should be introduced to blind and visually impaired students at this time.
Arts: Blind students need to participate fully in all music and arts activities. Usually only small adaptations will be needed for full access to these activities.
Physical development and health: These include gross and fine motor skills. Children are expected to move around the classroom, building, and school playground independently. Obviously, orientation and mobility instruction is critical at this stage for student independence. If the student is using an adult or peer sighted guide at this time, the student will not have the opportunity to develop these skills and both the child and the school will develop undesirable habits and attitudes of dependency. Kindergarteners are expected to have independent self-care skills in toileting, washing hands, hanging up coats, and eating. Blind children should be afforded the opportunities to learn these skills as well.
These, then, are the kindergarten skills that lay the foundation for later academic, social, and functional life skills. Let’s move now to the higher levels and see what Maryland requires of students.
The Maryland “Voluntary State Curriculum” (VSC) refers to the skills students need at each grade level. The skills in the VSC go from pre-kindergarten to grade eight, and there is a VSC for math, English and language arts, science, social studies, health and PE, fine arts, and most recently, technology literacy. The Maryland State Department of Education is also currently drafting standards for career education.
Parents should be familiar with the VSC for the grade level of their children. It helps to provide a good measure of what their children should learn in school, the blindness skills needed, and how their children are progressing. IEP goals and objectives can be developed based upon where the student’s skills lie. Expectations of blind students within the VSC should be equal, but at times need to be different, to master these skills.
Here are highlights of some of the cumulative skills students need in the core curriculum, as well as some specific skills in the expanded core curriculum that blind students need to know by the end of eighth grade.
By the end of grade eight, students are expected to have mastered a great many math skills. These include mathematical computations, reading data displays, understanding geometric concepts, and knowledge of how to use math tools. In order to learn all of these skills, blind children need to learn to use adaptive tools and techniques for measuring, calculating, and constructing math problems. Braille students need to know all of the Nemeth code in order to effectively read and write math.
Eighth graders should be able to read grade-level vocabulary and texts with accuracy, speed, and comprehension. It is not acceptable that Braille readers should read slower than their peers. Current research in reading identifies strategies for improving reading fluency and speed, and these should be incorporated automatically in instruction for Braille readers. Slower reading doesn’t need to become a “given” just because a student reads Braille. Other strategies for good reading that are expected skills for this age group are even more critical for Braille readers. This includes the ability to utilize headings, subheadings, footnotes, and the skill of skimming to help gain meaning from text. Learning these skills are slightly different for Braille readers than print readers, and it is essential to have teachers with a strong knowledge base in Braille and reading to teach these skills.
The Maryland science curriculum will begin to have more of a focus in the future as the department of education will pilot our state assessment in science next spring for grades five and eight. Access to hands-on activities and experiments are crucial for blind students to learn the concepts in biology, physical and earth science, electricity, and energy. Instruction in tactile graphics is essential to interpret results of investigations in both graphics and data displays.
By the end of eighth grade, students have become much more independent and are maturing into young adults. They care about the way that they dress and have become quite independent in their sense of style. They socialize with friends, make their own snacks, and travel in their neighborhoods and at the mall independently. They should be doing chores at home, such as helping with laundry, cleaning, cooking, and other household tasks. Blind students should also be maturing and developing these skills of independence. Instruction and focus on the expanded core curriculum throughout the grades helps to ensure that blind students achieve these same milestones. They need the orientation and mobility skills to travel independently and hang out with friends to foster socialization. They need the technology skills to use computers and assistive technology devices for completing schoolwork and accessing the Internet. Equal expectations at home and at school and learning blindness techniques fosters independence, high self-esteem, and self-determination. Career education at this age should focus on thinking about strengths, interests, and awareness of careers and future education options.
At the high school level, Maryland’s focus on the curriculum is through the “Core Learning Goals.” Blind students need to continue to learn the academic skills in these core areas in order to pass the High School Assessments. But they also need the other skills and experiences that will help them prepare for adult life. Orientation and mobility should focus on advanced independent travel skills in a variety of environments and situations, and especially utilizing transportation systems. Independent living skills should focus on higher levels of independent cooking and personal management of clothing and money. Students need technology skills to access printed and electronic information, e-mail, instant messaging, and blogging. High school students need self-advocacy skills. This includes assuming responsibility for school and homework, decision-making, knowing about and advocating for the accommodations they need, and knowing how to access the resources available to them as adults. They need volunteer and/or work experiences to learn job skills and responsibility.
Parents and teachers working together on areas in the expanded core curriculum will give students the skills and opportunity to be equal and build their capacity for a future with a full and independent life.
by Chris Emery, Sun reporter
Reprinted from the Baltimore Sun, August 14, 2007.
Editor’s Note: There will be more articles to come about the 2007 one-of-a-kind NFB Youth Slam summer event. But, as we go to press, we were just able to squeeze in this reprint of an article from the major paper in the Baltimore area. Here is what the Baltimore Sun published:
Camp Inspires Students Toward Careers Once Beyond Reach
Dave Wohlers leaned against the cold laboratory bench, gripping a white cane. He listened as the three blind girls across the bench struggled with their experiment.
“Oh, I dropped the wire,” one girl said.
“I’ll get it,” replied another.
Her stool screeched across the tile floor of the Johns Hopkins University chemistry lab as she climbed down to grope for the wire. The girls were building an electrolytic cell, a power source of the sort that might one-day fuel ultra-green cars. Such technical projects are difficult, even for students with good eyes. But Wohlers showed no pity for the twenty or so blind students under his tutelage that morning. His role as an instructor was to guide and inspire--not to coddle.
The experiment was part of Youth Slam 2007, a science camp sponsored this month by the Baltimore-based National Federation of the Blind (NFB) that attracted about 200 blind students from around the country. It grew out of a larger initiative by the Jernigan Institute, a NFB program launched in 2004 to foster a culture of self-sufficiency in the blind community. Blind children are being pushed to pursue careers that even the most optimistic once thought beyond their grasp.
“The big thing is to inspire them to do more than they previously thought possible,” said Mark Riccobono, executive director of the institute.
Bolstering the initiative are new electronic devices that act as a blind person’s eyes by turning visual information into sound or Braille text. IPod-sized translators can take photos of printed documents and read them out loud. Portable computers known as notetakers can store reams of information--novels, scientific data and personal reminders--then reproduce it instantly as lines of Braille. And talking instruments can tell blind scientists the color, temperature, and weight of chemical compounds.
NFB officials say the combination of technology and hands-on lab experience will boost blind students’ confidence. Wohlers hopes that will help them overcome hurdles similar to those that nearly kept him out of science. “ If you can feed the thinking by doing it physically,” he said, “somehow you have a recognition that ‘I can do this.’”
Such surety was hard won for Wohlers, who was completely blind by age eight, the result of a genetic condition that caused cancerous tumors to form on his retinas.
He first developed a keen interest in chemistry while attending a school for the blind in Vinton, Iowa. “I loved the competition in the classroom,” he recalled. “And I loved the idea of synthesizing something new that nobody had made before. “Aptitude tests also showed he might make a good scientist.
But Wohlers had never heard of a blind chemist and neither, it seemed, had anyone else. Back then, “blind scientist” sounded like a virtual impossibility. When his high school guidance counselor told him it was too bad he couldn’t go into chemistry, Wohlers didn’t think to ask why he couldn’t. “I just didn’t know anybody who did that,” he said. “ If you were good, you were a teacher. If you were special good, maybe you were a lawyer. Otherwise, you were a piano tuner or broom maker, or some other manufacturing job.”
In 1970, he entered the University of Iowa as an economics and business major, thinking it was a practical field for a blind man. He soon discovered he had made a mistake. “I just couldn’t stand reading that stuff, and I couldn’t motivate myself,” he said. “I realized that maybe I wasn’t following my bliss.”
After failing an economics exam, he switched to a double major in chemistry and mathematics despite his misgivings about science as a career. “There were no guarantees I could do the lab work,” he said. “We didn’t even have microcomputers then. I just had faith that someday there would be a solution, that the technology would catch up.”
Other students acted as Wohlers’ eyes in the laboratory. They handled the chemicals, mixed the various reagents, and measured the products. Wolhers was the brains behind the operation, telling the volunteers what to do at each step. He learned a lesson about science that would carry him through his career: The lead scientist doesn’t have to do the laboratory grunt work. “It quickly became very apparent that chemistry is a cerebral sport,” he said, “and not hand-to-hand combat.”
Wolhers decided he would need to be the boss--managing the ideas, people, and data, while delegating the bench work to sighted assistants. He could be intellectually immersed in the work, if not physically connected to research. But not everyone was convinced a blind man could do science. Wolhers discovered this when he applied to the graduate program at Iowa State University’s chemistry department.
Iowa State was the professional home of Henry Gilman, a pioneering organic chemist who had gone blind in 1947, about a third of the way through his career. Known as a stern taskmaster who demanded much of his graduate assistants, Gilman published more than five hundred papers after losing his sight. In 1977, he was awarded the Priestley Medal, the American Chemical Society’s highest honor.
Despite that precedent, Iowa State turned down Wohlers’ application. “ They wrote me back a rejection letter saying they didn’t think people who are blind can do chemistry,” he said. “The recruitment committee must not have known Henry was on their faculty.”
The chemistry department at Kansas State University saw things differently and accepted him into their graduate program.
Wohlers’ graduate research focused on inorganic synthesis and photochemistry, the study of how light alters a substance’s chemical properties. As in his days as an undergraduate science major, he directed the intellectual orchestra while assistants played the laboratory instruments.
“It took longer, no question,” he said, “and I didn’t produce as much work as the next guy, but I did enough to get the job done for a Ph.D.”
He parlayed his doctorate into a faculty position in the chemistry department at Truman State University in Missouri, where he still teaches. “I’m not the first blind chemist and I’m not the only blind chemist,” said Wohlers, fifty-five, “but I’m one of the few blind chemists.”
He hopes programs such as the Youth Slam will help increase those numbers by raising blind students’ expectations for themselves and giving them hands-on lab experience.
The students in the Johns Hopkins lab that muggy morning were working mostly on their own to construct the fuel cells. The three girls across the bench from him were making steady progress despite their early difficulties. Two were high school students, both seventeen and considering science careers. Courtney Lee, from Seattle, wanted to be a chemist, and Colleen McBride, from Madison, New Jersey, thought she would make a good biologist, or maybe a doctor.
The third member of the group was Heather Oklak, twenty, a blind business major at Indiana University who volunteered to act as the younger girls’ mentor. They found the dropped wiring and combined it with a battery and saltwater solution to simulate the storage of energy in a hydrogen fuel cell car.
“It’s going to smell like chlorine and it’s going to bubble,” said Oklak as they applied electric current to the salt water.
“Oh, yeah, it’s working,” McBride said.” It smells like a pool!”
“It’s sodium chloride,” Lee said,” so that makes sense.”
After a minute of charging their fuel cell, they hooked it up to a talking voltmeter, a device that measures the energy stored in the cell.
“Zero point zero nine four,” the machine said in a computer voice.
“What’d it say--zero point zero four nine?” McBride asked.
“No, I think it was zero point four eight zero,” Lee replied.
Standing farther away now, Wohlers remained silent, letting the young scientists learn their lessons the hard way.
by Laura Weber
Editor’s Note: Laura Weber is the president of the Texas Parents of Blind Children (TPoBC), a division of the NFB of Texas and one of the newest affiliates of the National Organization of Parents of Blind Children (NOPBC). Texas will be the host of the 2008 NFB Convention, and Laura and our Texas parents will be on hand to help make it the best convention ever for families of blind children. For more information about the TPoBC, contact Laura Weber by phone at (832) 971-7571 or by e-mail at <[email protected]>. Here is what Laura has to say about her experiences as the mom of a blind daughter, and what she has gained from her membership in the NOPBC:
When we took our daughter to her two-month checkup, I mentioned to her pediatrician that her eyes seemed to jerk and that she wasn’t visually tracking things yet. She wasn’t on track with the developmental checklists and, although I wasn’t too worried, something didn’t seem right.
Our doctor told us that the involuntary eye movement was known as nystagmus, and he got us an appointment with a pediatric ophthalmologist that very same day. I guess I should have realized that something was up for us to get an appointment so soon, but I still wasn’t overly worried. The ophthalmologist confirmed the nystagmus and after examining her, told us that Lindsay was extremely farsighted. She rapidly ran down a laundry list of conditions that might be causing the nystagmus, and told us to come back when Lindsay was six months old. We left the office feeling confused and frustrated, but we thought that being farsighted wasn’t that bad. She would just have to wear glasses, right? Wrong.
We got a copy of the ophthalmologist’s records and showed it to a friend of ours who is an optometrist. Jotted to the side of the exam notes were the words “possible Leber’s Congenital Amaurosis.” Huh? The doctor never mentioned that in the exam. We started researching on the Internet, and what we found was very frightening.
Unable to wait another four months, we made an appointment with another pediatric ophthalmologist for a second opinion. He told us that he agreed with the diagnosis that had been jotted in her chart, and said that we should probably start looking into things like Braille. But, like the first ophthalmologist, he never used the word blind. Then he ushered us to the front desk to pay our bill, and sent us on our way. That was it. That was how we found out that our beautiful, healthy, and perfect baby was blind. And, apparently, that’s where the doctors felt their obligations ended. We were never referred to early childhood intervention services. We were never referred to a parent support group. We were never given books, brochures, or a list of references. We were just sent home.
We were devastated. We were lost. We felt like all the dreams we had for our daughter’s future were crushed. And everyone around us contributed to that thinking. Some friends sent us flowers. A neighbor from down the street whom we had never even met, heard about Lindsay through the grapevine and brought us a daily meditation sympathy calendar. People offered to cook for us. Everyone said how sorry he or she was. Now please don’t think that I didn’t appreciate their attempts at being supportive but, in retrospect, they treated us exactly like a family whose child has died. And that’s how we felt.
I started searching the Internet for support groups and information, and I became more depressed. 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 CTVIs and COMS--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 my daughter would be discriminated against, and I’d need to become an expert on the law and on advocacy. Where was the good news? Who could tell me what to do? Who could tell me that it would be okay?
Then I got in touch with the National Federation of the Blind (NFB). I requested information from their parent division, the National Organization of Parents of Blind Children (NOPBC). 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 mantra I kept repeating to myself over and over was this:
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.
When I first contacted NOPBC, they did not have a parents chapter in Texas. So, I got involved in another local parent support group. It was a great place to meet other parents and to find resources, but something was missing. I wanted to be part of a group that promoted a positive message about blindness, and I wanted to meet blind adults who could help me teach those beliefs to my daughter. A group of parents, teachers, or therapists can sit around all day talking about how to teach my daughter blindness skills, but only a blind person has experienced being blind. I’ve met wonderful, caring, and intelligent professionals in the blindness field, and I’ve learned a lot from them but, unless they’re blind, they are speaking as observers. For many of the things that my daughter needs to learn, that’s fine, but when she wants to talk to someone who truly knows what she faces and how she feels, I believe that only another blind person can fill that need. The analogy I like to use is this: a man can be a brilliant, talented, and caring obstetrician. He can have the knowledge and skills to deliver babies. He can have a wonderful bedside manner. He cannot, however, tell you what it feels like to give birth. For that, you should talk to another mother.
In my opinion, the major difference between NOPBC and other
parent groups is that the NOPBC is part of the NFB, and the NFB’s philosophy
is what I want my daughter to learn and live. I want her to have a positive
attitude, self-determination, and high expectations; and I want her to have
competent, successful blind role models. NOPBC helps me stay focused on my goal
to raise my daughter to be a happy, healthy, independent, and successful adult
with good life skills, social skills, academic skills, and career skills. In
short, I want for my child what all parents want for their children. My desires
and expectations aren’t different or lower because she’s blind.
Last fall I had the privilege of attending the NFB of Texas state convention in Houston, and at that time, a state chapter of NOPBC was formed. Texas Parents of Blind Children (TPoBC) came to life, and I was elected president. My goal is to pass on the message of the NFB to parents of blind children all over Texas.
My daughter turned five years old this summer. She’s slowly but surely learning to use a cane and to read Braille. She’s smart and beautiful and is, without a doubt, the happiest kid I’ve ever met. I feel good to be raising her in the NFB. I want her to have the opportunity to have a Braille pen pal, participate in Braille reading contests, and have a blind mentor. The NFB has all those programs. I also want her to meet successful blind adults, and to be able to go to them with questions and frustrations. I will never be able to completely understand what life is like for her; besides, what child wants to go to her mom all the time? I want Lindsay to go to camp, have summer jobs, get life skills training, go to college, and have a career and family. The NFB promotes all those things. Together we’ll teach her that it’s respectable to be blind.
by Rene Harrell
Editor’s Note: Some great conversation threads appear on the <[email protected]> listserver sponsored by the National Organization of Parents of Blind Children. Occasionally, parts of those conversations have enough substance, detail, and insight to stand-alone. Such is the case with the remarks below by Colorado mother, Rene Harrell. Here is Harrell as she describes her struggles to untangle the threads of cause-and-effect for her child who has multiple disabilities:
From: Rene Harrell
To: NFBnet Blind Kid Mailing List, (for parents of blind children) <[email protected]>
Sent: Thursday, June 14, 2007
Subject: Re: What do you REALLY believe about blindness?
This is a great conversation. I’m so glad to see this on here, because I’ve actually been thinking about this a lot lately.
Our daughter has multiple disabilities, which had made untangling
the threads of “why” she can’t do certain things hard for us as her parents.
Why wasn’t she verbally on par with her peers? Why the certain persevering play
behaviors? Why was she lagging in certain motor skills?
She is adopted and came home to us at the age of four, so we also had the transition from her foster home to a whole new country and new language to throw into the mix.
I haven’t had the chance to attend any NFB events, though I would dearly love to make it to a national convention. As of yet, we’ve never had the opportunity to meet any other children who are blind. I’ve struggled to figure out what is a blindness issue, what is a mental retardation issue, what is an autism issue, and what is just unique to Clare. But this list has been a wonderful resource, and two beliefs have really anchored me in this journey: 1. Blind children should have the capacity to achieve on par with their peers. In Clare’s case, this means that she has the capacity to achieve on par with children who share her other disabilities but are sighted; and 2. Our job as her parents is to encourage and foster every milestone of independence that she has the capacity to achieve.
Truly believing these two things has been a transformative process for me. I can’t say I always believed them in my core. I’d dress her and change her and put on her shoes and always have her hold my hand; and we never made any steps towards anything more. And then, when we really started to believe in these two core principles, we began to expect more out of Clare. Since her developmental and cognitive age hovers around age two, I took a good hard look at my two-year-old son and started taking stock--and started to push.
Clare will be six in September and is only now beginning to talk. She has a vocabulary of about fifty words. But with a little assistance, she is now dressing and undressing herself. She is not potty trained but she can take off her diaper, put on a new one, and then wash her hands with just a little prompting (obviously these are the “clean” diaper changes). She can brush her teeth and her hair. She can feed herself with a spoon and a fork. She can navigate our house. Now when we go to the playground, I take her on a tour to show her where all the equipment is and then push her to do it herself.
She initially fought every single one of these pushes. (Whew! We had some major meltdowns of disappointment and frustration.) But then we got the wonderful chance to stand back, watch her blossom, and see the pride she has in herself when she finds she can achieve. Each time she’s risen to reach a new expectation, it’s shown us that we will never know her true capacity unless we are stretching her to grow. And we gain more and more confidence to challenge her when we see the positive results that come from encouraging her to figure out how she can do things for herself instead of needing things done for her.
She rides a tricycle now, and she is playing T-ball in the three-year-old league with her brother at the local YMCA, as it is her cognitive age. (We didn’t tell them she was blind.) We’ve shown her where the T is, how to figure out where the ball is on the T, and how to swing the bat. The only help we give her is to have someone at the bases shouting so she knows where to run, and they have to do that for all the kids anyway. She’s in gymnastics with peers her own age (either her dad or I stay with her to help her follow directions).
Each time a new task comes up, I ask myself how much of this can she do on her own? We are now working on different fasteners, such as buttons, zippers, laces, etc. She can’t zipper entirely on her own, but if I get it started, she can pull it up the whole way. She can’t buckle herself in her car seat, but if I thread the top fastener together and tell her to “push,” then she can click it in on her own.
I’m probably rambling incoherently right now, but this listserver
has really challenged me to reframe how I think about blindness in light of
my daughter’s other disabilities. I always thought I had a positive attitude
about what blind people could achieve, until I was confronted with a child who
seemed so incapable of doing absolutely anything. And “blame it on blindness”
syndrome runs so rampant that it was hard not to get sucked into believing that
everything she couldn’t do was because she was blind. We had one doctor, God
bless her, who finally looked me in the eye and said flat out, “There is nothing
about blindness that would prevent your daughter from talking and don’t believe
anyone who says that.” This really kick-started us to begin forcefully advocating
against those who want to blame blindness for our daughter’s other challenges
in life. And since then, her quality of life has dramatically increased.
So THANK YOU all on this listserver, because you’ve been such an encouragement!
by Jon and Kathy Gabry
Editor’s Note: Kathy Gabry is a parent leader in the New Jersey affiliate of the National Organization of Parents of Blind Children, and Jon is her teenage son. Jon was featured in the Summer 2006 issue of Future Reflections (volume 25, number 2) in an article about the technology he uses as a deaf-blind high school student. In planning for this issue, I sent out a request for volunteer toy reviewers, and Kathy and Jon took on the challenge. Here are their reviews of the following educational Braille toy product:
Greggo Magnets, Inc.
8 West 43rd Street
Minneapolis, Minnesota 55409
Phone: (612) 824-1782, Fax: (612) 824-1794
Item #GM-23 Magnetic Braille, Retail: $12.50
One set includes sixty-three one-inch brightly colored squares--lime green, purple, red, blue, aqua, yellow, among others--with both jumbo Braille and colorful print letters. One set includes two full alphabets, punctuation, the number symbol, and the capital letter symbol.
I like the Braille magnets a lot because they are very clear, big, and easy to read and feel. I used the Braille rather than the letters to make words because it was too hard for me to see the print letters. I made messages in both contracted and uncontracted Braille. I think the magnets were a little weak, but they were okay.
I think I liked this toy so much because it is the first time that I ever saw big Braille on a toy. I think children in preschool through third grade would probably enjoy these magnets a lot. The set would also be a good toy for sisters, brothers, and friends because they could learn Braille and make fun messages too. I think every young blind child should get these magnets for Christmas or as a birthday gift.
Jon and I have had a good time playing with the Greggo Magnets for a couple of months. They’ve been a colorful and fun addition to our refrigerator.
As a sighted person, I would rather have seen more vowels and commonly used consonants like r, s, t, l, n, e, and a than two each of x, q, and z. I also would have liked to have seen commonly used contractions like and and the, and I was a bit miffed that when I opened the box, I didn’t see any contractions. Yet, when I mentioned this to Jon, he quickly told me that I was mistaken; that there were contractions. He pointed out the b for but, the c for can, and a rotated y for and. Then he quickly found the Brailled letters to spell my name. In Braille it was just fine, but in print it was: k,tjy.
What? Does that really read kathy? It sure does. He used a k, he rotated the comma to make an a, he used a t, he rotated a j to make an h, and he used a y. He then wrote his friend Megan’s name, and in print it read: meg(blank)z (m--e--g--rotated symbol for caps--rotated z to make an n).
For a sighted person, looking at Braille messages that in print absolutely doesn’t make sense--like those above--could prove rather confusing, but it also presents--as Jon says--an opportunity to really begin learning Braille. Using the magnets as a communication tool in school could definitely send some confusing messages to a sighted child, but an understanding, thoughtful teacher could provide feedback and insight when the kids were making messages.
Jon mentioned that the magnets were a little weak, and I agree. We weren’t able to use them on the front of our refrigerator, which has a textured surface; we had to use them on the side, which has a flat surface.
My other complaint about the magnets is that on some of the squares there is very little contrast between the background color and the color of the print letter. For example, there is a green letter on an aqua square, a red letter on a purple square, and a brown letter on a red square.
All in all, we’ve had a lot of fun with the magnets. The price is right, and my son enjoys them. As long as you’re comfortable with rotating the print letters to find a Braille letter or contraction, you’ll have loads of fun making short messages on your family refrigerator.
Bigger, Better Prizes
Information and forms are available online at: www.nfb.org/nfb/NOPBC_Braille_Readers_Are_Leaders.asp
Paper forms may be requested by e-mail, mail, telephone, and
1800 Johnson Street
Baltimore, Maryland 21230
Phone: (410) 659-9314, extensions 2360 or 2361
Fax: (410) 659-5129
by Lynsey Scott
by Barbara Cheadle, President, National Organization of Parents of Blind Children
The Internet is an amazing communication tool. It is, without any deliberate or conscious effort on our part, circulating the Federation message and philosophy about blindness to thousands of parents of blind children all over the world. Several parents in the United Kingdom (UK)--which includes England, Scotland, and Wales--read Future Reflections and our other literature online, and also participate in the NOPBC’s blindkid listserver. One such mum (or mom, as we say in America) is Lynsey Scott. She thinks our approach to blindness makes sense, and, despite resistance from the blindness establishment, is teaching her blind daughter (who has a little bit of vision) Braille and the use of the long white cane.
But Mrs. Scott is also trying to help other children in the UK. A Braille petition created by Harmony’s mum and other parents in the UK has received nearly 3,000 signatures and the parents continue to ask why registered blind children are not learning Braille, even when they cannot keep up with their peers by print alone. UK citizens can sign the online petition until the 27th of August. For more information go to <http://petitions.pm.gov.uk/SaveBraille/>.
Although the Federation’s Braille Readers Are Leaders contest and Braille Reading Pals program do not operate outside the USA and Canada, Mrs. Scott found out about it, and, with our permission and some creativity on her part, used the materials in the program to help her daughter improve her Braille skills and also to raise funds to get important Braille technology. Here’s what Lynsey Scott, an English mum, has to say about her daughter’s progress:
Lynsey Scott: Harmony is six years old and home educated. She is registered as blind and is learning to read and write with both print and Braille, despite being told by professionals not to bother with Braille. She took part in the American NFB Braille Readers Are Leaders 2006 Braille Reading Pals program in order to raise awareness about Braille in the UK and to raise money for her own Mountbatten Brailler. Harmony completed her program in January 2007, and received a certificate from the National Federation of the Blind in America.
Harmony was sponsored by friends and family for taking part
in the NFB program, and raised nearly enough money to buy her Mountbatten. Victa,
a charity for visually impaired children, agreed to pay the remaining cost.
Harmony received her Mountbatten Brailler in June because it had to be shipped
from Australia where they are made. Harmony also met the lady who sells the
Mountbatten here in the UK, Patricia Fraser; she moved here recently, and works
for Quantum Technologies, creators of the Mountbatten.
Here’s what the National Federation of the Blind (USA) says about Braille and why they conduct the Braille Readers Are Leaders program. This is from the NFB Web site, <www.nfb.org>:
The purpose of the Braille Readers Are Leaders program is to help blind and visually impaired children become good Braille readers. Good readers have confidence in themselves and in their abilities to learn and to adapt to new situations throughout their lifetimes. Furthermore, Braille literacy is one of the highest predictors of success in later life for blind students. It’s estimated that about eighty-five percent of blind and visually impaired people who are employed are Braille readers.
However, many parents and children do not know that Braille is a viable alternative to print or that Braille readers can be competitive with print readers. Too many blind children graduate from school with low expectations for themselves as readers. The Braille Readers Are Leaders program generates enthusiasm, raises expectations, and instils pride as children come to realize that reading Braille is fun and rewarding.
PVIC (Parents of Visually Impaired Children) is a UK-based online
yahoo group set up by Harmony’s mum for parents of visually impaired children
and visually impaired adults who wish to support parents and share positive
VIC is the ‘sister’ group to PVIC and is a place for parents and professionals (teachers, staff, and volunteers working with visually impaired children and their families): <http://uk.groups.yahoo.com/group/visuallyimpairedchildren/>.
Independent Movement and Travel in Blind Children: A Promotion Model
A Volume in Critical Concerns in Blindness
by Joseph Cutter
Introduction and Review
by Barbara Cheadle, Editor, Future Reflections
President, National Organization of Parents of Blind Children
Independent Movement and Travel in Blind Children: A Promotion
A Volume in Critical Concerns in Blindness
by Joseph Cutter
Includes bibliographical references
Copyright 2007 IAP--Information Age Publishing, Inc.
ISBN 13: 978-1-59311-603-3 (paperback)
ISBN 978-1-59311-604-0 (hardcover)
331 pages, large print font, black and white photos.
Hardback and paperback editions are available for purchase from IAP at <www.infoagepub.com> (search by author, Cutter). Paperback copies are also available from the NFB Independence Market: <[email protected]>, fax (410) 685-2340, phone (410) 659-9314, extension 2216.
Joe Cutter has finally done it. He’s written a book with answers to the questions that parents have been asking ever since the NFB revolutionized orientation and mobility (O&M) for blind kids by being the first to produce and promote kid-size canes for toddlers on up. For years, parents have been asking: When is a child ready for a cane? What kind of cane should she use? How long should the cane be? What if my child has additional disabilities? Our traditionally trained O&M instructor is using techniques and strategies that don’t work with our three-year-old; is she just too young or is there a different approach that will work?
The last question is key to understanding the unique breakthrough that Cutter’s book represents. This is more than a book about cane techniques and teaching strategies (although there is enough of that to satisfy the most detail-oriented parent or instructor), it is a guide that lays out a whole new way to think about and approach the facilitating of normal--yes, normal--movement and independence in young blind children.
That’s what has made it so hard to select a segment to reprint from the book. If we only print the practical tips and strategies, then the reader will not fully understand the vital conceptual underpinnings; and if we only print segments about principles and philosophy, then we lose the practical-minded who are looking for specifics. So, as editor, I determined that to do this properly, it required printing a segment from two different sections of the book. Going in reverse order, the first segment is reprinted from chapter 4, “Cane Travel for the Blind Child--From the Bottom Up.” This is a very practical discussion of the specific functions, uses, and characteristics of the cane, with special attention to its functionality and adaptations for the very young child. Last is a segment reprinted from chapter 1, “The Promotion Model.” This segment is a short explanation of the philosophy behind the practices that are described in the book, with specific attention to the bottom-up concept that Joe Cutter has pioneered in the development of the Promotion Model.
Having said all this, it still does not do justice to the importance of this book. Since movement is essential to all aspects of development and growth for every blind and visually impaired child, the value and scope of this book goes far beyond questions related to the use of the white cane. In fact, I can say--without hesitation--that if the parents, caregivers, or instructors of blind/visually impaired children between the developmental ages of birth to kindergarten could only have one book or one resource to consult--this is the one they must have.
With permission of IAP--Information Age Publishing, here are pages 149-160 as reprinted from Independent Movement and Travel in Blind Children: A Promotion Model:
Functions of the Cane
The cane is a handheld tool used for independent movement and travel. It performs many functions. Under the blind child’s direction, it can inform, explore, inspect, detect, protect, and most of all, facilitate getting to know and moving in the world.
To illustrate, the cane is more than a windshield wiper on the world. It is the steering wheel that can be manipulated to where the traveler wants to go and gives direction for whenever the traveler wants to circumvent an obstacle. It is the headlights giving preview of what’s ahead. It is the bumper protecting from unexpected encounters. It is the antennae receiving resonance information about the sound space world. It is the tires, adjusting to the terrain and providing a smoother safe ride. Like the car, the cane is as effective as the driver who must obey the laws of the road. The cane gets children where they want to go.
Below is a list of the basic functions of the cane.
Characteristics of the Cane
The characteristics of the cane can affect the safety, effectiveness, and efficiency of the traveler. As travelers, blind children and blind adults have the same requirements for the characteristics of the cane. These main characteristics that need to be considered when choosing a cane are: composition, weight, length, grip, tip, flexibility of the shaft, resonance affordability, and one piece or folding.
As blind children mature and develop appropriate posture, balance, hand-functioning, height, and size, they will use a proportionately larger cane. Over the years, I have experimented with a variety of types of canes, grips, and tips. I have found that the straight, hollow, flexible, lightweight, metal-tipped canes, such as those available through the National Federation of the Blind, possess the most advantages for the blind traveler. These canes start at about 24 inches and, as their length increases, the overall proportions of the cane are scaled larger. The design of the cane is not altered. This creates a seamless continuity for the child and makes it unnecessary to adapt to a different type of cane.
The characteristics of the long cane can either afford the traveler advantages in use of this handheld tool or not. Below is a list with a brief explanation of the characteristics that have the most significant effect on the independent movement and travel of blind children.
Eventually, a telescoping or folding cane might be an option as a back-up cane, or when the child has developed efficient reaction time and a light touch with using the cane. However, in the early movement of blind children, adults must promote what is known to be best to facilitate independent movement and travel, and which affords a rich and valuable experience in using the cane.
When these characteristics of the cane are considered carefully, we are more likely to choose a cane that places the blind child at an advantage. The bottom line is this: any cane is better than no cane. However, if we are to promote the independent movement and travel of blind children, we should consider the characteristics outlined above. We should be placing blind children at an advantage by using what we know has worked successfully when learning to use the cane.
When these characteristics are considered and built into a cane, this becomes the cane of choice for the blind child. There are blind adults who use this cane of choice every day and blind children should have the opportunity to use it too. The Resources chapter gives contact information for purchasing this cane through the National Federation of the Blind.
Ideas for Adapting the Cane for the Child
To better meet the needs of the child, it may be necessary to adapt the cane. The cane may need to be adapted for various reasons--hand and finger functioning, keeping the tip oriented down, and differences in the child’s developmental level to grip and use the cane. Below are some ways to adapt the cane.
These modifications can be removed as the child develops more advanced hand-functioning and control over inadvertently lifting the cane, or when personal preferences for griping the cane change.
[The following segment is reprinted from chapter one, pages 10-12, of Independent Movement and Travel in Blind Children--A Promotion Model, with permission of IAP--Information Age Publishing.]
The Building Blocks of the Promotion Model
Below are the building blocks of the Promotion Model. First, the philosophy, which is its essence and spirit. Second, the principles, which are the foundational truths that support the model. Third, the developmental perspectives, which are the fundamental beliefs to fuel and guide the model. Fourth, the strategies, which put the philosophy, principles, and developmental perspectives into a plan for action. And fifth, the practices and techniques, which facilitate and put the strategies into action in the everyday learning and development of life skills for the independent movement and travel of blind children.
Philosophically, we must acknowledge that child development is built on gain and not loss. The adult-centered approach of conventional O&M gives significant consideration to the loss of vision that adults experience later in life. When looking at child development, however, the Promotion Model recognizes that loss of vision does not factor significantly in the developmental gains that children make every day. Children born blind or who lose vision in the first years of life do not experience the type of loss associated with adults who lose vision. These children have not acquired years of developing visual skills nor do they possess a visual orientation to the world that has a long-standing integration into their personality.
For blind children, success is not measured by how much vision they have, but rather is built on how many skills are developed for independent movement and travel. With one skill built upon another, the goal of development is mastery over the environment to move and travel safely, confidently, and independently.
In the Promotion Model, the child leads the way, and if we are willing to learn from the child, many possibilities emerge. As an O&M professional service provider, I have connected with parents of blind children, incorporated them into my service delivery plan, and learned much from their experiences with their blind children. I have partnered with the organized blind that have provided me with positive, skilled blind role models for independent movement and travel. The building blocks of the Promotion Model have been developed from years of such learning from blind children, their parents, and skilled blind adults (the organized blind). Together, they form the fabric of the “nature and nurture” of independent movement and travel. Together, they present a formidable, alternative program of O&M to promote the independent movement and travel of blind children.
The child is not born with concepts of the world. The baby is born with sensory systems, like “fingers of the brain,” that gather information. With sensory and motor experiences the child matures over time and gives purposeful thought to what is experienced. One way to describe this process is bottom-up, which means that out of the experience comes the concept. If the experiences we give blind children are developmentally sound they will experience independent movement and travel age/stage appropriately. Blind children will develop the concept or self-perception of themselves as travelers.
Historically, conventional O&M was developed as an adult-centered approach. Its protocols were developed from an adult point of view for adult learners. For instance, the adult was given the concept of a new skill and the skill demonstrated for him/her. Then the newly blinded adult would perform the skill. This can be described as a top-down approach, which means that out of the concept comes the experience. This is a very different approach than bottom-up, which is the perspective of the Promotion Model.
Bottom-up is driven by the sensory and motor experiences of the child, and top-down driven by the cognitive concepts directing the movements of the adult. For example, when blind children under three years of age are learning to use the cane, they will need to be amused, explore, and have fun with their cane. Their movements will be more exaggerated and less refined. On the other hand, these are not the behaviors or the goal of the adult learning cane travel for the first time; adults will be ready to perform at a different cognitive level of understanding.
When promoting independent movement and travel in blind children we need to approach skill acquisition from the bottom-up, making sure our intervention and practice is suited to the developmental ability of the child. Imposing a top-down approach at a developmentally inappropriate level will meet with frustration and disappointment for both the child and the teacher. As a result, the conventional O&M instructor often assesses that the child is not ready for O&M instruction or ready for using a cane. In the latter case a pre-cane device is often used. Within the Promotion Model, however, the blind child is ready for instruction, just not from the top-down but rather from the bottom-up.
by Gary Wunder
Editor’s Note: It’s not uncommon for aunts, uncles, cousins, and most especially grandparents to reach out for resources and information when a beloved baby or young child in their family is diagnosed with blindness. These days, many of those searching for information find the National Federation of the Blind (NFB) and the National Organization of Parents of Blind Children (NOPBC) on our Web site at <www.nfb.org> and <www.nfb.org/nopbc>. Some of those who read our material will also send us e-mails asking for additional encouragement and help. Sometimes these letters ask for very detailed, specific help--such as sources of funding for medical procedures--but usually not. Usually, the letters are short and vague. Sometimes a bit of sadness or fear is evident, but not always. What is really wanted must be read in the spaces between the lines. One such grandmother contacted me recently, and when I replied I also suggested (as I always try to do) that she contact the NFB state affiliate president in the state in which she lives. In this case, it was Gary Wunder, president of the NFB of Missouri. The grandmother did write to him and, with sensitivity and insight, Gary read between the lines and answered the question that weighed most heavily on her heart. Here is what he said:
From: Gary Wunder
Sent: Thursday, April 26, 2007
Subject: The blessing of your new grandson
First, let me begin by telling you how glad I am you have written to us. We are very willing to help. No one chooses to be blind, and your sadness is understandable. Even with a good attitude and positive information, the grief you feel will take some time to work through. Equally true, however, is that blindness does not have to be the most important characteristic in your grandson’s life, and with proper training and opportunity, blindness can be reduced to the level of a nuisance and an inconvenience.
When you read this, you may be tempted to think you are getting hype and spin, but I assure you that my life and the lives of many others affirm these statements. Our job as blind people, and your new job as one who cares about a blind person, is to make sure that training and opportunity are both made available to your grandson.
It is our job because we who are blind have the most to lose or gain through good public policy, and because we feel a special kinship with other blind people--especially blind children with whom we feel a special bond and responsibility.
So what is good training? For someone like Matthew it starts with providing stimulation--things he can feel, hear, taste, and smell. It means thinking about what others get through sight and trying to be sure he gets it some other way. Too many blind children are initially diagnosed as developmentally disabled or mentally retarded because, lacking stimulation, they don’t do at various stages those things used to judge age-appropriate progress. So, the toys which swing should also ring, the lights can be replaced with sounds, and there’s no substitute for holding and talking to the child. When language begins to be understood, let some of that talk focus on what’s around. Ask yourself: what of interest do I see, and what are people doing and why is that interesting? Then tell him about it.
In writing this out, it sounds like a forced prescription, but what I’m really talking about is cultivating a natural behavior. At first Matthew will simply receive, but later he’ll take an active part in telling you what he wants to know more about. Your job, at least at first, is to let him know there are things worth knowing.
As Matthew gets older your challenge will be to get him into a preschool program, or perhaps even before that, some kind of day care. You’ll have to be aware that while Matthew’s social involvement with other children begins with physically being present, that physical presence is no guarantee of inclusion. When the children are playing games, is he a player or a spectator? Most of the time he should be a participant, and most games are easily modified if, indeed, they require any modification at all.
There probably isn’t much benefit in going further at this point about how to make sure he has his books in elementary school, the challenges of dating, and how he will fill out college admission papers. All the concepts are the same--accept that Matthew is blind, expect normal age-appropriate behavior, and help convince him that to be blind is okay. And if you don’t see this happening, talk with us, the blind members of the NFB, and perhaps with other people if there are other conditions or disabilities that are a part of his life situation.
Just one last thought: all of this will be real for your grandson only if you believe it and work to see that it happens. Matthew will grow up with good attitudes and normal expectations if the blind people he sees around him expect it of him, and if you do, too. You and other adults in his life are more likely to have the same expectations of him if you see them lived out in the lives of the blind people you come to know, love, and trust.
Matthew’s future will depend on the future we together help to shape. Right now we spend a lot of time trying to make computers give us the same information with Braille and speech that you use your eyes to get from a computer screen. Our success will determine whether Matthew gets an education and a job. Right now we’re working to ensure that home electronics are usable without vision; more and more the easy-to-use knobs and switches on these devices are being replaced with touch screens and computers which could, but do not, talk.
When Matthew is old enough to take his long white cane in hand and go to the store for Mom, we want to ensure that cars still emit enough usable sound that he can determine when it is safe to cross the street. New hybrids and electric vehicles threaten the sound on which we have relied for a century, but we’re making important people aware of the problem and they want to help. I was at a conference of automobile engineers a week ago, and they were excited to learn about a need they could meet to build a better, safer vehicle.
I know my letter is far longer than yours, but I assure you that not all blind people are so long-winded. Some are actually articulate and concise.
Please write back and let’s consider a visit. I live in Columbia but we have chapters in many parts of the state. Having your address and a phone number would help and feel free to call me, too.
Gary Wunder, President
National Federation of the Blind of Missouri
Learning to love books and reading begins at home long before your child or student starts formal reading instruction. That’s true for all kids and it is just as true, and important, for blind and visually impaired children--including those with delays or additional disabilities.
Here’s a program that gently encourages--and rewards--parents who spend time reading daily with their blind or visually impaired child. It’s called Braille Reading Pals, and the program starts November 1 and ends December 30, 2007. We are in the process of taking registrations for the program now, so we can mail out the Braille Reading Pals packets in October. The packet contains literature about literacy and Braille, a free print/Braille storybook, a reading journal with instructions, and a free Beanie Baby reading “pal” to use in the program.
We have been doing this program for a number of years. This year we want to add something new. We would like, with your help, to evaluate our program so that we can see if it is making a difference and make it better in the years to come. You can choose to participate in the program but not the evaluation if you wish. Participation in the evaluation study will have no effect on the contact you have with the Braille Reading Pals Program or the NFB.
While a prize will be given to those families who complete the program, you will not be paid for the study portion. Information from this study may be presented at meetings or published in professional journals. This information will not include your name or information that can be easily traced back to you.
Please note that we send one packet per child. We have a limited number of packets but, when possible, we do consider special requests, so please explain your situation and we will do our best to accommodate. For more details about the program, see <http://www.nfb.org/nfb/NOPBC_BRL_Reading_Pals.asp>.
To register, please fill out and mail, fax, telephone, or e-mail
the following registration/information/consent form.
Dates to Remember
Registration: September 1 to November 1, 2007
Program: November 1 through December 31, 2007
Journal due: January 18, 2008
· A tactile children’s book
· A Braille Valentine’s Day greeting card
· A Braille bookmark
Prizes will be shipped within three business days of receipt of the Reading Pals Journal. Journals are to be mailed, faxed, or e-mailed to the same place the registration forms are sent.
Braille Reading Pals Registration Form
Mail: Braille Reading Pals, 1800 Johnson Street, Baltimore,
Fax: (410) 659-5129
E-mail: [email protected]
Note: The registration information may be e-mailed, but the consent form must be mailed or faxed.
[ ] I wish to register for the 2007 Braille Reading Pals program. I understand this is a pre-Braille literacy program for blind and visually impaired prereaders (babies, toddlers, preschoolers, and older children who are not yet independent readers).
Please send me ___Braille Reading Pals program packets to [ ] school/work address [ ] home address
[ ] Parent [ ] Teacher [ ] Librarian [ ] Other
Child’s name (first and last)
[ ] Male [ ] Female
Child’s name (first and last)
[ ] Male [ ] Female
Child’s name (first and last)
[ ] Male [ ] Female
The best way to contact me is by (provide at least one of the below):
Note: If you are a teacher or other professional you must provide the following signed consent form from the parent of each child participating in the program. (Please print out additional consent forms if necessary, or we will send them to parents with the registration packets.)
[ ] I give permission to the Braille Reading Pals, the National Federation of the Blind and to other Braille Reading Pals Partners to use the information obtained in this program, logs and telephone interviews, to evaluate the Braille Reading Pals Program. I am not giving up any of my legal rights by signing this form.
[ ] I want to participate in the program with my family but not in the evaluation study.
Signature of parent
Printed name of parent
by Jane Caulton, Head, Publications and Media Section, National Library Service for the Blind and Physically Handicapped (NLS), Washington, D.C.; Linda Redmond, Head, Reference Section, National Library Service for the Blind and Physically Handicapped (NLS), Washington, D.C.; Patricia Steelman, Senior Selection Librarian, Collection Development Section, National Library Service for the Blind and Physically Handicapped (NLS), Washington, D.C.; and Deborah Toomey, Network Consultant, Network Services Section, National Library Service for the Blind and Physically Handicapped (NLS), Washington, D.C.
Editor’s Note: Some months ago I called NLS staff member and expert in children’s literature, Patricia Steelman, with a question about the new NLS Web site, Kids Zone. Soon we were reminiscing about the development of NLS services to youth, and sharing our personal memories of people and pivotal events in that history. I vividly remember the Year of the Child celebration that NLS sponsored at their headquarters in Washington, D.C., in January 1989. I helped recruit children and their parents from within the National Organization of Parents of Blind Children to attend the event and was there--taking pictures--with my own ten-year-old son, Chaz. I was inspired by the memories and so curious about the details that I didn’t know, that soon I was going through channels to request an article about the history of NLS services to children and youth. Here it is and, as you can see, we have many people to thank for putting it together. I hope you find it as informative and fascinating as do I:
Rocco Fiorentino, an eleven-year-old boy who lives in New Jersey, loves reading so much that he has become a spokesperson for young blind readers in his state. Four years ago his passion carried him before the state legislature, where he discussed his love of recorded and Braille books, effectively curtailing a planned budget cut for his regional library.
Rocco is one of 21,985 children across the country and in U.S. territories abroad who benefit from the free reading program provided by the National Library Service for the Blind and Physically Handicapped (NLS), Library of Congress (LC). The special-format children’s collection has grown to 21,280 titles, including 8,265 Braille, 11,695 recorded, and 1,320 print/Braille. It includes children’s classics by such writers as Louisa May Alcott, Eloise Greenfield, Ezra Jack Keats, C.S. Lewis, A.A. Milne, Arthur Ransome, Dr. Seuss, Mark Twain, and E.B. White. Popular book series such as Swallows and Amazons, Alex Rider Adventures, the Chronicles of Narnia, Dear America, Harry Potter, the Magic Tree House, and Redwall Abbey can be culled from the catalog. Books that have won such awards as the Newbery Medal, the Coretta Scott King Award, the John Steptoe Award for New Talent, the Schneider Family Book Award, and the Sibert Medal are also available. NLS also offers eight children’s magazines, four in Braille, and four on cassette.
Books are selected according to the NLS Collection Building Policy, which was developed to ensure that blind and handicapped readers have access to the “same types of books and information available to the general public through public libraries.” Works added to the collection must be readily available in print and widely reviewed; those of “long-standing value” are given priority. The books are recreational in nature, whether fiction or nonfiction. The NLS catalog also includes books produced by network libraries according to regional interest or importance.
Establishment and development of the children’s reading
The NLS children’s collection has been shaped by a number of policies, influences, and experts over the years. The Library of Congress was authorized to provide reading materials to blind children on July 3, 1952, when House Resolution 7231 became Public Law (P.L.) 446. The law amended An Act to Provide Books for the Blind Adult, which was passed in 1931 and established the free library service for blind persons, by removing the word adult. This deletion allowed the Library of Congress to use a portion of its annual appropriation to provide Braille and recorded books for juvenile reading materials. It also encouraged the network of libraries serving blind and physically handicapped readers, established at the program’s inception, to reach out to youth.
The Division for the Blind, as the program was then called, purchased thirty-five children’s talking-book titles from the American Printing House for the Blind catalog when funding became available later that year. These books, which formed the nucleus of the children’s collection, included the popular titles The Adventures of Huckleberry Finn, George Washington’s World, Little Men, Little Women, and The Yearling. Simultaneously, machine-lending agencies, which distributed talking-book machines, were advised to issue machines to youth (including those who lived in institutions), but to ensure that adult guardians were responsible for the equipment.
With the passage of P.L. 446, the division faced three challenges regarding service to children. First it had to determine what ages would best be served by the program. Proponents of Braille literacy argued that talking books might impede the desire of preschoolers to learn Braille. In addition, some worried that time spent reading books would curtail playtime and thus stifle social development. The division, therefore, adopted a policy prohibiting the issuance of talking books to children younger than age five. Next, the division decided to avoid duplicating the efforts of the American Printing House for the Blind, which provided school textbook material, by offering only recreational reading materials for school-aged children. The final challenge was to identify the method of selecting appropriate books for the new patrons. It was decided that a specialist in juvenile literature should be sought and that a policy be established to guide the selection of materials and identify the categories of youth to serve.
The American Library Association (ALA) Division of Libraries for Children and Young People (DLCYP) helped the LC Division for the Blind establish an advisory committee. The original committee included children’s coordinators at the Seattle, Brooklyn, Concord, and New York public libraries, and a representative from the Minnesota Braille and Sight Saving School. Two members of the Booklist editorial staff--the assistant-in-charge of children’s books and the assistant-in-charge of young people’s books--also served on the first committee. The charge to the committee was to provide guidance on the selection of books suitable for children ages five through thirteen.
Eventually the geographical dispersion of the various representatives proved too much of a challenge, leading to the reorganization of the committee in 1958. The new committee appointed by the Library included children’s services coordinators from the Cuyahoga County (Ohio) Public Library, the Enoch Pratt Free Library (Maryland), the Free Library of Philadelphia, and the New York Public Library--all from the East Coast--and the Library of Congress children’s literature consultant. Called the Advisory Committee on Selection of Children’s Books for the Blind, the group met for the first time September 24-25 at the Division for the Blind in Washington, D.C. The meeting allowed the committee, which had previously communicated mostly by mail, to become acquainted with the Library’s catalog of children’s books and to discuss the division’s goal of establishing a basic collection of one thousand books, including the titles already available. In two working sessions, the committee decided the frequency and form of the lists of titles to be recommended, age groups to consider in selection, and subject areas to be augmented. The group also decided to meet annually in the spring and fall and to rotate the meeting place among the members.
The committee evolved with the passage of time, as did the division. In 1962 Congress passed legislation to provide special-format music materials, and in 1966, P.L. 89-522 extended the service to people whose handicaps prevented them from using standard print and increased the number of regional libraries that could participate in the network. The division was renamed the Division for the Blind and Physically Handicapped (DBPH). Sixteen years later, when the Library of Congress was reorganized, DBPH became the National Library Service for the Blind and Physically Handicapped, as it is known today.
In 1981, to help network librarians understand the role of the children’s advisory group--renamed the Children’s Book Selection Committee--NLS published guidelines in the Network Library Manual. The manual noted that the body provided “guidance on policy and procedures affecting collection-building activities” and assisted “with special projects as needs arise.” The five librarians that made up the committee were to be recommended by NLS and invited by the Librarian of Congress to serve two-year terms, which could be extended for an additional two years. NLS was to select nominees on the “basis of their professional experience as children’s librarians, knowledge of juvenile literature and collection-building activities, and awareness of the informational and recreational reading needs of blind and physically handicapped children.”
During the 1980s, the group continued to convene twice a year, in two-day meetings with the NLS children’s specialist in collection building. One meeting was held in Washington, D.C., and the other was hosted by a committee member on a rotating basis. The committee identified, read, discussed, and--by consensus--recommended retrospective and current children’s titles for inclusion in the collection. Members included representatives from the network of cooperating libraries, as well as nationally recognized leaders in children’s librarianship.
By 1988, the selection of children’s books had become a more viable, integrated part of NLS collection building and the program had benefited from the participation of experienced children’s librarians. The children’s committee, therefore, was dissolved and its responsibilities merged with those of the Ad Hoc Advisory Group on Collection Building Activities. The Collection Development Advisory Group, as it is known today, now includes a children’s librarian and a young adult librarian, meets annually, and makes recommendations for all aspects of the NLS collection, including materials for children and young adults.
Building the collection
Throughout the program’s history, NLS’s policy has been to ensure accessibility to popular reading materials for all its patrons. The program is also committed to publishing the full content of each book in Braille or recorded format. It also ensures that readers may enjoy reading through the lens of their own imaginations. Audiobooks, therefore, do not include music and dramatizations. And when considering books for the Braille collections, NLS is careful to select books with graphics that lend themselves to tactile re-creation or that can be removed without severely impacting the quality of the reading. Picture books, a preschool favorite, pose a major hurdle.
While pictures are an important feature of many children’s books, only stories that can be conveyed without pictures will succeed in Braille or audio format. Selections for the collection include a wide range of stories, songs and rhymes, alphabet and counting, and simple nonfiction books. Many have been produced in the print/Braille format--printed text and pictures accompanied by Brailled text on each page--particularly winners of the Caldecott award, which is presented to illustrated books. Using this format, blind patrons can share the reading experience with their sighted family or friends. The NLS print/Braille collection includes more than thirteen hundred titles. In addition, several network libraries independently produce print/Braille books for their collections.
School-age youth require a larger and more diverse collection of books to fit their wide range of interests and abilities. Converting the print books into recorded and Braille editions is a costly, complex process. Popular works like H.A. Rey’s Curious George, E.B. White’s Charlotte’s Web, and J.K. Rowling’s Harry Potter and the Sorcerer’s Stone must be produced in the formats for which they are best suited. In recording the books, the narrators must be careful to use the right tone to convey the story without becoming excessively dramatic. Braille versions of such books may require removing graphics that cannot be rendered in a tactile format, and must usually be produced in multiple volumes that often require shipping in several containers.
Once selected for the NLS children’s collection, books begin the process of transformation to special-format materials. The Production Control Section assigns books to professional recording studios or Braille presses for production. Sample copies--Braille and recorded--are returned to NLS for quality assurance testing. Braille and audio specialists examine the special-format copies for accuracy, clarity, and completeness of the special format products before they are duplicated for distribution to cooperating libraries, which in turn circulate them to patrons.
Children’s magazines are also available through the program. Jack and Jill was the first magazine to be offered in Braille. American Girl, Boys’ Life, and National Geographic Kids followed in 1963, and in 1964 Jack and Jill became the first recorded magazine offered to young patrons. Youth currently served by the program may subscribe to the Braille versions of Boys’ Life, Muse, Spider: The Magazine for Children, and Stone Soup. They may also request cassette versions of Cricket: The Magazine for Children, National Geographic Kids, Spider: The Magazine for Children, and Sports Illustrated for Kids.
Presently NLS offers all eligible readers recorded books and magazines available on cassettes that play at 15/16 inches per second. As the program prepares to transition to a digital system in 2008, selections for the program are recorded in a digital format. Audiobooks and eventually magazines and music materials will be issued on solid-state cartridges that will play on a digital talking-book player. These audio materials will soon be downloadable from the Internet.
Since 1999, patrons--young and old--have been downloading Braille books, magazines, and music scores from the Web-Braille site on the Internet. They read the materials online or by using Braille output devices.
Delivering free library service to children
Patrons receive their books from local libraries that work collaboratively with NLS to serve blind and physically handicapped people. Frequently referred to as the network of cooperating libraries, these agencies are supported by state, local, or private organizations. They share a cooperative, informal relationship with NLS and are guided by the standards and guidelines developed by NLS in concert with the American Library Association. The latest edition, Revised Standards and Guidelines of Service for the Library of Congress Network of Libraries for the Blind and Physically Handicapped, was released in 2005.
Because they are autonomous, network libraries develop their own programs and collections. In addition to circulating special-format materials from NLS, they may also loan large-print books and descriptive videos to their patrons. Libraries that have in-house studios record books of local interest for adults and children. The network libraries also hold a variety of community programs, especially activities for youth.
To determine how library service was being provided to children in preschool through junior high, NLS commissioned Leslie Eldridge, a former network librarian, to conduct a study in 1985. She held a series of interviews with youth who were library users, interested parents, special education teachers, child counselors, reading specialists, and librarians to learn how they used libraries and what information needs were or were not being met. Teachers described their use of the NLS program and discussed approaches to conducting classroom reading. Counselors explained how educational systems can encourage happy, healthy, well-rounded children and discussed obstacles that children with handicaps may encounter in some environments.
Ms. Eldridge visited four regional libraries to gather information about the nature of their juvenile readership and programs and to obtain recommendations for improving services for print-handicapped children. The ideas, opinions, and concerns from the various groups were compiled in a report called R Is for Reading. This monograph emphasizes encouraging blind and physically handicapped children to read and use libraries. Common threads in the interviews with the children are their love of reading and the value of books in their lives.
Heidi Coe, thirteen years old at the time, quipped, “I love books. I have one mouth for eating and another for books.” Ten-year-old Masumi Scherb said, “I like both Braille and tapes. I listened to Mutiny on the Bounty. I like to read about ships.” And Tammy Garner, age six, piped, “I like the library because it has lots of books.”
While these comments may cause one to smile, a secondary thread moved NLS to action: the lack of reading materials available to children and the need to expand expertise in the program, as well as awareness about its services. One parent lamented that she couldn’t find books about sports in the collection, a librarian expressed concern that teachers did not know about the talking-book service, and a child was disappointed that she couldn’t get her Winnie-the-Pooh books on tape.
In response to the report, NLS formed an internal Children’s Services Committee in 1987 to follow up on the concerns, issues, viewpoints, and recommendations that related directly to NLS services. The committee, led by Elizabeth Carl, assistant head of the Network Services Section, was charged with developing national outreach activities to expand services to the twenty thousand children enrolled in the program.
The committee focused on improving services and increasing the use of materials available through the program. The members decided that their first duty was to determine current operations and to ensure that guidelines and procedures were written. Members reviewed statistics on juvenile readership and lists of libraries providing specific services to children. They also considered patron reading patterns and educational trends, gathering information from schools for blind individuals and other institutions concerned with services to children.
Year of the Young Reader
While NLS was in the midst of its study focusing on children’s services, Congress passed and President Ronald Reagan signed Public Law 100-662, proclaiming 1989 as the Year of the Young Reader. In January NLS held a kick-off program to recognize young readers who participated in the free library service. Approximately sixty blind and physically handicapped children from schools in Maryland, Virginia, and the District of Columbia attended the event, which featured critically acclaimed children’s writer Eloise Greenfield and The Kids on the Block: Puppets with a Purpose. The famous troupe, known for its diversity and inclusion of characters with disabilities, presented a skit based on a special script written for the occasion.
The children participating in the festive event received a colorful reader’s card with print and Braille identifying them as readers in the national free library service. “This personal reader card reaffirms our nation’s goals for all young readers,” noted Frank Kurt Cylke, director of NLS.
The event launched the national distribution of reader’s cards to all network library participants younger than fourteen years of age, often at similar local events throughout the country. NLS sent Year of the Young Reader publicity materials to fourteen hundred public school district special education supervisors and to one thousand public children’s librarians nationally. Regional libraries received Year of the Young Reader cards to distribute to their patrons, and other youngsters received their cards directly through the national automated mailing list. Additional library cards were made available on request from the NLS Publications and Media Section. NLS also reprinted the Discoveries series of four bibliographies in anticipation of increased usage, and later that year, released a list--in print, audio, and Braille--of books favored by young readers.
During the Year of the Young Reader, network libraries also paid special attention to children’s services. Many added new programs and expanded previous activities, using funding in innovative ways to emphasize the excitement that reading brings. In addition, the number of libraries, both public and network, offering summer reading programs increased.
Approximately sixty-eight of the 131 cooperating libraries offer summer reading programs. Some participate in their state’s Collaborative Summer Library Program, supported by a grassroots consortium of forty-two state agencies and associations working together to provide high-quality summer reading programs. Network librarians encourage readers to sign up for programs at their local public libraries or offer specialized programs at their sites. Each year, usually in May, network libraries kick off summer reading programs with a specific theme.
Regional libraries conduct many types of incentives to build participation. They hold rallies, performance events featuring favorite authors and games, or other activities for children ages five to fourteen to promote their reading programs. They send invitations to special programs and parties and offer gifts to participants. Some double the amount of space devoted to children in their newsletters, present certificates and prizes at the end of the summer, and ask young readers to share their favorite books. These summer programs normally conclude with a special event and awards ceremony.
Special-needs readers signing up for summer reading programs at their local public libraries either receive books directly from their network libraries or pick them up at their public libraries.
In addition, most of the 131 network libraries provide year-round special services for children--thirteen have children’s story hours and nineteen produce print/Braille books locally. They host reading clubs and hold special programs, such as author celebrations honoring popular writers such as Beverly Cleary and Dr. Seuss. The libraries appeal to children and teenagers with programs like Children’s Book Week and Teen Book Week. In addition, they conduct outreach to schools, community groups serving children and families, hospitals, and rehabilitation centers. The Massachusetts Braille and Talking Book Library and the Minnesota Library for the Blind and Physically Handicapped, both located on campuses of schools for blind children, have provided juvenile reading services since 1933.
Library staff appears at school in-service training sessions, public library workshops, special-education schools and centers, and conferences attracting children, parents, and caregivers. In their quest to ensure that all children may enjoy reading, these librarians make every effort to inform the public about their services and to let all children know that there is a place for them in the library.
Service in the twenty-first century
NLS recently took another step to encourage juvenile reading among the blind and physically handicapped population. Recognizing that children are spending more time at computers, Patricia Steelman, the Collection Development Section children’s librarian, developed and implemented a page specifically for them on the NLS Web site. Kids Zone, at <www.loc.gov/nls/children/index.html>, allows children to search NLS’s catalog for books that appeal to them, without having to navigate through books for adults. In addition, the site provides links to lists of available books in the most popular children’s series, such as the Chronicles of Narnia and Harry Potter. Children can also learn what magazines are available to them and how to subscribe. In the future, the Web site will carry subject bibliographies for youth, incorporating bibliographies prepared by network libraries, and--once the digital talking-book program is launched--provide live links to downloadable audio files, similar to those already established for Web-Braille.
Steelman, who came to NLS in 1997, has focused on ensuring that multicultural books and award winners are included in the collection of children’s reading materials. At the onset of the new millennium, Hornbook magazine, the Random House Publishing Company, the New York Times Book Review, and the Washington Post’s Book World published lists of classics and books considered to be the best of the century. Steelman consulted these lists to recommend selections for conversion from analog to digital format.
In 2001, the Collection Development Section organized and presented a Children’s and Young Adults’ Services Workshop, a one-day preconference for the biennial National Conference of Librarians Serving Blind and Physically Handicapped Individuals, held in Richmond, Virginia. Network library representatives shared information about their reading programs and listened to children discuss their reading experiences. Beverly Becker, ALA Office of Intellectual Freedom, also moderated a panel debate titled “Access vs. Censorship.” The sessions helped empower librarians by creating a forum for sharing and gathering information to strengthen their youth programs and services.
As an active member of the ALA Association for Library Service to Children (ALSC), the NLS children’s librarian has served as a standing member of the Schneider Family Book Award committee since its inception in 2003. The award was established by Dr. Katherine Schneider to honor authors and illustrators who portray children living with handicaps as part of the human experience. The committee annually recognizes one picture book, one middle school book, and one teen book.
The programs set in place and encouraged by the National Library Service for the Blind and Physically Handicapped have grown out of the organization’s commitment to supporting life-long readers. Serving children is fundamental to this ideal because childhood is the time when individuals develop a love of reading that fuels an enduring appetite for books. Rocco Fiorentino became an NLS patron when he was five years old. He earned his pet dog, Louis (named after Louis Braille), by reading his first twenty books. “Reading Braille is like putting a light inside me,” he says. “I move my fingers across the dots and a whole new world is open to me, full of opportunities. If I can’t read Braille, I’m just a kid with no future.”
NLS exists to ensure that Rocco and kids like him have promising futures.
Editor’s Note: The following article is an abbreviated version of an article that appeared in the June 2007 issue of the Braille Monitor, a monthly publication of the National Federation of the Blind. However, since this is such an important issue facing blind people across the country, we urge you to take some time to read the full article. The title is “What Congress Doesn’t Know Could Damage the Talking Book Program” by Chris Danielsen and it can be accessed online at <www.nfb.org/nfb/Braille_Monitor.asp>. Jim McCarthy, NFB director of government affairs, adds that as we go to press, the House of Representatives has voted for an allocation of $12.5 million for the Talking Book Program, and the Senate Appropriations committee of the Senate has agreed to the same amount--two thirds of the requested amount of $19.1 million. It has yet to come before the full Senate for a vote, and the chair of the relevant subcommittee, Senator Mary Landrieu of Louisiana has pledged to seek additional funding. Therefore it is crucial for constituents, both blind and sighted, to contact members of Congress and ask them to fully fund the requested $19.1 million for the conversion to digital books and players. More on how to do so is located at the end of the article. Here begins Danielsen’s introduction:
To the benefit of hundreds of thousands of blind Americans,
Congress has always provided broad, bipartisan support for the National Library
Service for the Blind and Physically Handicapped of the Library of Congress
(NLS). Although the NLS has been planning the conversion from audio cassettes
to digital technology since 1990 and has documented the process of designing
digital Talking Books and players in excruciating detail in newsletters and
publications, only recently has Congress expressed any interest in the details
of that conversion. The sudden scrutiny being brought to bear on the Talking
Book program, however, comes late in the game, causing one to wonder why such
logistically complex and demanding projects are not examined by Congress as
they are being implemented rather than at the very point where funding to complete
them is critical.
Because the Government Accountability Office (GAO) and Congress are raising questions at a moment when the manufacture of the cassette players that have been used by Talking Book readers for years has ceased and parts for them are no longer available, putting the brakes on the digital conversion will almost certainly cause prolonged interruptions of service for many library patrons. For this reason it is incumbent upon the National Federation of the Blind to set the record straight and explain the very good reasons why NLS has pursued its current course of action.
As soon as we learned of the date of the public hearing promised by Congresswoman Wasserman Schultz, John Paré, the incoming executive director for strategic initiatives of the National Federation of the Blind, submitted written testimony. Mr. Paré summarized that written testimony at the actual hearing, which was held on Tuesday, May 1. The following is an excerpt from that testimony and from a subsequent letter Mr. Paré sent to the committee to answer further questions.
John Paré, executive director for strategic initiatives,
NLS is the only public library that serves the blind in the United States. In fact, it is more than a public library. If a public library in a given city closes down or cuts back on services due to funding concerns, sighted readers can visit another library, go online, or go to Barnes and Noble, Borders, or other booksellers. These are not realistic options for most blind people.
In 2006, 731,460 blind and physically handicapped Americans relied on NLS as their primary source of reading materials. However, the program is at a point where the traditional medium by which books are delivered—audiocassette—is obsolete. In order to continue the service while protecting the rights of copyright holders and meeting the needs of a demographically diverse group of patrons, the library must update its technology so that books can be delivered and played in a digital format. Otherwise the service will cease to exist. The critical need for this conversion to digital Talking Books has driven the program’s budget request for fiscal year 2008.
While commercial audio books have achieved popularity among sighted readers for reading while driving, purchasing these books is beyond the means of many unemployed or elderly blind people. Also many of these books are abridged and present only a portion of the original book. Finally, only a small fraction of all print books is available on audiocassette. For all of these reasons commercial audio books are simply not a suitable source of reading material for the blind. Therefore the funds provided by the United States Congress to support and maintain this vital service for the blind cannot be replaced by any bookstore or public library.
As you would expect, the realization that one will lose sight can be frightening and depressing at first. But blindness need not be a tragedy as long as the tools for full participation in society are available. Access to information is one of those tools, and as long as it remains available to us, blind people can be productive, educated, and informed citizens.
In the late nineties the National Library Service realized that eventually cassette tapes would become obsolete, and a new medium for delivery of Talking Books would be needed that would last for at least a generation. For this reason NLS began a deliberate, detailed, and painstaking process to identify the form that Talking Books would take in the twenty-first century.
NLS considered all potential digital technologies for the delivery of Talking Books. Wisely the service looked beyond the audio CD, which, as we speak, is becoming an outdated medium for digital audio. CD players have moving parts, which means that if distributed free to NLS readers, they would require considerably more maintenance than other technologies, thereby increasing the cost. Flash memory, which was a new technology at the time the National Library Service began the process of designing the next generation of Talking Books and players, is now ubiquitous and inexpensive, has more storage capacity than CDs, and requires no moving parts.
While there are off-the-shelf audio players that rely on flash memory, these devices are not designed with blind people in mind. A blind person, in fact, cannot use most of them independently, because they rely on the navigation of complex visual menus to issue commands and have tiny controls that cannot be manipulated by someone with a physical handicap. For this reason NLS spent approximately two years conducting usability tests across the United States with blind and physically handicapped consumers of all ages and varying degrees of technological prowess in order to design a Talking Book player that would meet the needs of all of the people that use its services.
The National Library Service solicited the input of consumers at every stage of the development of the new Talking Book players and the special flash memory cartridges that will store the Talking Books. NLS kept readers informed of developments at each stage of the process through a quarterly newsletter and updates in its regular publications. Representatives of NLS attended gatherings of consumer organizations and accessible technology trade shows and conducted extensive question-and-answer sessions at all of these gatherings. In short, every decision made by NLS about the design of new Talking Books and their players has been made with an extraordinary level of input from the people who will actually use the service and with careful attention to detail. The result of all of this diligence is that, once this conversion is completed, the service will be on sound technological footing for decades to come.
Consideration of the blind and physically handicapped children and adults who use the services provided by NLS was critical to the development of the new machines and book cartridges. In recognition of this fact, NLS avoided use of a screen in the design of the new Talking Book machine, because these displays are often difficult for individuals with limited vision to read. Also several large buttons that can be easily identified both visually by their color and tactually by their shape and size are built into the new playback machine. Each of these buttons has a defined task.
The players and cartridges designed for this program are extremely durable. Individuals qualified to receive materials under this program pay nothing for the books and their players. Therefore the library has sought to control the cost of replacement and repair of machines by making a solidly constructed Talking Book player intended to last for many years. As mentioned earlier, the player has virtually no moving parts, resulting in drastically reduced wear and tear on the player and consequently little need for continued repair and maintenance.
The NLS program is regarded as a model of effective and efficient service to its consumers; however, unless Congress agrees to fund the request for purchase of next-generation machines and cartridges containing the digital Talking Books, this service cannot continue. The requested appropriation for 2008 is $19.1 million in addition to the usual NLS budget request of $55 million, a relatively small amount when the technology involved and the value of this service to consumers are considered.
On behalf of all blind Americans, I urge this committee to support these critically important programs to ensure that the blind and physically handicapped continue to have the opportunities created by broad and timely access to information. Thank you.
[A few days later, after committee members voiced more questions, Mr. Paré felt compelled to respond. Excerpts from that letter are reprinted below:]
The answer to this question lies in the provisions of 17 U.S.C. §121, as amended by this subcommittee in 1996. This provision of the U.S. Copyright Act authorizes NLS to reproduce any printed book or magazine without seeking the specific permission of the copyright holder, provided that the printed material is reproduced in a specialized format and distributed only to NLS patrons who are blind or physically handicapped. The “specialized format” language means that Talking Books produced by NLS cannot be produced in a format that makes them playable by commercially available audio devices. The cassette books currently being produced by NLS are recorded at half normal speed; they are unintelligible if played on a cassette player purchased from a commercial electronics supplier. They can be played only on the special cassette players that are loaned to patrons of the network of libraries affiliated with NLS or on similar players sold by vendors specializing in products for the blind. If NLS uses commercial technology to produce Talking Books, it will quickly find itself swamped with claims of copyright violation by angry authors and publishers, resulting in costly litigation and probably in the ultimate loss of the exception to the copyright laws that make the production of these Talking Books possible. In other words, compliance with the letter and spirit of the Copyright Act makes it absolutely necessary for the NLS program to use proprietary rather than open-source media and technology.
The answer to this question is yes. The manufacture of the cassette machines currently used by NLS has ended, and parts for these players are no longer available. If this subcommittee declines to provide the NLS with the full $19.1 million requested, thereby stretching out the distribution of digital Talking Books and players over a longer period of time than currently contemplated in the NLS strategic plan, then patrons will experience long waiting periods when no books or players are available to them. The vast majority of NLS patrons will be cut off from their only source of information and leisure reading.
It is imperative that members of Congress understand why NLS has designed the new digital Talking Book program in the way that it has if the conversion to digital Talking Books is to be funded. Making sure federal funds are not spent wastefully is a legitimate function of government, but the zeal to save tax dollars must not put a critical program serving the blind population in jeopardy. Over the next few months members of the National Federation of the Blind should take every opportunity to contact our members of Congress and make sure they understand the critical importance of fully funding the NLS appropriation request for fiscal 2008. The continuation of the Talking Book program and that program’s viability in the twenty-first century depend on our vigilance.
How do I contact my Congress members?
To find contact information for your particular senator and representative, visit <www.senate.gov> and search by state, and <www.house.gov> and search by your nine-digit ZIP code. Due to terrorism concerns, you will have a much better chance of getting to your Congress member by phone, by e-mail, or by fax. Remember to identify yourself as a constituent of his or her district or state, and clearly refer to the necessary $19.1 million requested by the National Library Service for the conversion of its Talking Book program from analog to digital technology. The House of Representatives currently plans on adjourning on October 26, and while the Senate has not yet announced when it will adjourn, McCarthy urges constituents to contact their Congress members as early as possible to let them know that there are educated and concerned constituents following the events on the Hill.
by Anne Taylor, Director of Access Technology
There is no place quite like the International Braille and Technology Center for the Blind (IBTC) at the NFB National Center in Baltimore; it is a unique and ever-expanding collection of current access technology. The evaluations performed on the IBTC equipment are impartial, and the NFB Jernigan Institute provides this knowledge to the public. Anyone who is looking to purchase a piece of software or equipment, or anyone with an interest in access technology is welcome to visit this facility.
The impact of an initiative like the IBTC does not simply lie in having the access technology sitting around; the access technology (AT) team associated with it is always on hand with expert opinions and qualified help. The team can provide tours of the IBTC, give feedback on specific questions, and address a variety of technology issues that visitors may have encountered. Whether you are looking at embossers, notetakers, cell phones or even low-vision equipment, the AT specialists can give you advice tailored to your needs, either in person or over the phone.
The technology specialists support the Technology Answer Line, and will help you with any technology questions no matter where you live or which aspect of AT you want to cover. In addition to this, we can provide you with print or Braille copies of the Technology Resource List, an annually updated listing of what is available in access technology. The list is also available online from the NFB Web site at <http://www.nfb.org/nfb/Technology_Resource_List.asp>. The resource list gives an overview of the technology that is available for blind users, prices, manufacturer contact information, and other helpful details.
A new and perhaps less well-known feature of the technology initiative at the NFB is the Accessible Home Showcase (AHS). This space holds samples of mainstream home appliances that are usable by the blind. Because none of the current appliances on the market are truly accessible, we have opted to focus on those machines that are most usable and efficient. The showcase covers large appliances, such as ranges, microwaves, dishwashers, and the like, and other small electronics as well. The NFB welcomes visitors to this new facility, and the AT team can help if you are trying to find something for your home.
As with the IBTC, there is a list of appliances and electronics associated with the Accessible Home Showcase. This list contains a brief description of the nonvisual interface and suggestions about things to look for and consider before buying a unit. It describes the machines that are on display in the AHS, as well as some other easily available appliances that you are likely to come across when you go shopping for a new appliance. The list is available in Braille, print, and online (see <http://www.nfb.org/nfb/accessible_home_showcase.asp>). The online version is updated as often as needed. Our access technology team welcomes any additions to or comments about the list so we can continue to improve it as a practical tool that helps consumers find the brands and models that will best suit their needs.
We encourage all NFB members and other access technology users to communicate their experiences to our IBTC staff. Because the NFB is in close communication with the access technology manufacturers and many mainstream technology companies, your comments can change the look of future products. The AT team is always working to get better products to the consumers. Part of that commitment means that our AT team is often involved in testing units for manufacturers before these products are released.
Web accessibility is high on the agenda for many people. The AT team is very involved in promoting better design to increase Web site accessibility. Our team tests and evaluates sites, and awards the NFB Non-visual accessibility seal to those sites that qualify. Certified Web sites are listed on the NFB Web site, and members can use the web accessibility section of the NFB site at <http://www.nfb.org/nfb/certification_intro.asp> to notify the AT team of inaccessible Web sites.
The International Braille and Technology Center and the Access Technology team have some formidable resources. Please do not hesitate to use us when you want help, advice, or just a look around. You can reach the AT team via option 5 on the NFB main menu at (410) 659-9314; or you can e-mail us at <[email protected]>. The Access Technology staff does not customarily provide individual training sessions; however, the AT staff reserves the right to evaluate individual requests. For further information, please contact Anne Taylor at <[email protected]>.
by Sharon Cohen
Editor’s note: At the 2007 NFB Convention, we released a fascinating biography about a blind man who earned a medical degree and practiced medicine in the early years of the twentieth century: The Blind Doctor: The Jacob Bolotin Story, by Rosalind Perlman. Also on the convention agenda was a blind psychiatrist, Mark D. Stracks, M.D., who spoke on the topic, “The Blind Doctor Practicing Today.” So, the young man in the following April 2, 2005, Associated Press article by Sharon Cohen, is not the first blind person to earn a medical degree, nor the second, or even the third. Nevertheless, the article is inspiring, and it contains fascinating and useful details that can inspire and inform parents and teachers who may have never considered medicine or the sciences as a potential career path for blind youngsters. Here it is:
The young medical student was nervous as he slid the soft, thin tube down into the patient’s windpipe. It was a delicate maneuver and he knew he had to get it right.
Tim Cordes leaned over the patient as his professor and a team of others closely monitored his every step. Carefully, he positioned the tube, waiting for the special signal that oxygen was flowing. The anesthesia machine was set to emit musical tones to confirm the tube was in the trachea and carbon dioxide was present. Soon, Cordes heard the sounds. He double-checked with a stethoscope. All was okay. He had completed the intubation.
Several times over two weeks, Cordes performed this difficult task at the University of Wisconsin Hospital and Clinics. His professor, Dr. George Arndt, marveled at his student’s skills. “He was one-hundred percent,” the doctor says. “He did it better than the people who could see.”
Tim Cordes is blind. He has mastered much in his twenty-eight years: Jujitsu. Biochemistry. Water-skiing. Musical composition. Any one of these accomplishments would be impressive. Together, they’re dazzling. And now, there’s more luster for his gold-plated resume with a new title: Doctor. Cordes has earned his M.D.
In a world where skeptics always seem to be saying, stop, this isn’t something a blind person should be doing, it was one more barrier overcome. There are only a handful of blind doctors in this country. But Cordes makes it clear he could not have joined this elite club alone.
“I signed on with a bunch of real team players that decided that things are only impossible until they’re done,” he says. That’s modesty speaking. Cordes finished medical school at the University of Wisconsin-Madison in the top sixth of his class (he received just one B), earning honors, accolades, and admirers along the way.
“He was confident, he was professional, he was respectful, and he was a great listener,” says Sandy Roof, a nurse practitioner who worked with Cordes as part of a training program in a small-town clinic.
Without sight, Cordes had to learn how to identify clusters of spaghetti-thin nerves and vessels in cadavers, study X-rays, read EKGs and patient charts, examine slides showing slices of the brain, diagnose rashes, and more.
He used a variety of special tools, including raised line drawings, a computer that simultaneously reads into his earpiece whatever he types, a visual describer, a portable printer that allowed him to write notes for patient charts, and a device called an Optacon that has a small camera with vibrating pins that allow his fingers to feel images.
“It was kind of whatever worked,” Cordes says. “Sometimes you can psych yourself out and anticipate problems that don’t materialize. You can sit there and plan for every contingency or you just go out and do things. That was the best way.”
That’s been his philosophy much of his life. Cordes was just five months old when he was diagnosed with Leber’s disease. He wore glasses by age two, and gradually lost his sight. At age sixteen, when his peers were getting their car keys, he took his first steps with a guide dog.
Still, blindness didn’t stop him. He wrestled and earned a black belt in tae kwon do and jujitsu. An academic whiz, he graduated as valedictorian at the University of Notre Dame as a crowd of 10,000 gave him a standing ovation.
Cordes finished medical school in December but still is working on his Ph.D., studying the structure of a protein in a bacterium that causes pneumonia and other infections. Though he spends ten to twelve hours a day in the lab, Cordes also carried the Olympic torch when it made its way through Wisconsin in 2002 (he runs four miles twice a week) and has managed to give a few motivational speeches and accept an award or two.
He’s even found time to fall in love; he’s engaged to a medical school student.
But Tim Cordes doesn’t want to be cast as the noble hero of a Hallmark special. “I just think that you deal with what you’re dealt,” he says. “I’ve just been trying to do the best with what I’ve got. I don’t think that’s any different than anybody else.”
He also shuns suggestions his IQ leaves his peers in the dust. “I just work hard and study,” he says. “If you’re not modest, you’re probably overestimating yourself.”
Through the years, plenty of people have underestimated Cordes. That was especially true when he applied for medical school and was rejected by several universities, despite glowing references, two years of antibiotics research, and a 3.99 undergraduate average as a biochemistry major.
Even when Wisconsin-Madison accepted him, Cordes says, he knew there was “some healthy skepticism.” But, he adds, “the people I worked with were top notch and really gave me a chance.”
The dean of the medical school, Dr. Philip Farrell, says the faculty determined early on that Cordes would have “a successful experience. Once you decide that, it’s only a question of options and choices.”
Farrell worried a bit how Cordes might fare in the hospital settings, but says he needn’t have. “We’ve learned from him as much as he’s learned from us. One should never assume that any student is going to have a barrier, an obstacle, that they can’t overcome,” he says.
Sandy Roof, the nurse practitioner who worked with Cordes in a clinic in the town of Waterloo, wondered about that. “My first reaction was the same as others’: How can he possibly see and treat patients?” she says. “I was skeptical, but within a short time I realized he was very capable, very sensitive.”
She recalls watching him examine a patient with a rash, feel the area, ask the appropriate questions, and come up with a correct diagnosis. “He didn’t try and sell himself,” Roof adds. “He just did what needed to be done.”
Cordes says he thinks people accepted him because most of his training was in a teaching hospital, where he blended in with other medical students. One patient apparently didn’t even realize the young man treating him was blind.
Cordes grins as he recalls examining a seven-year-old while making the hospital rounds with Vance, his German shepherd guide dog. The next day, he saw the boy’s father, who said, “I think you did a great job. [But] when my son got out, he asked me, ‘What’s the dog for?’”
With his sandy hair and choirboy’s face, Cordes became a familiar sight with Vance at the university hospital. The two were so good at navigating the maze of hallways that interns would sometimes ask Cordes for the quickest route to a particular destination.
Some professors say Cordes compensates for his lack of sight with his other senses especially his incredible sense of touch. “He can pick up things with his hands you and I wouldn’t pick up like vibrations,” says Arndt, the anesthesiology professor.
Cordes says some of his most valuable lessons came from doctors who believed in showing rather than telling. “You can describe what it feels like to put your hand on the aorta and feel someone’s blood flowing through it,” he says, his face lighting up, “but until you feel it, you really don’t get a sense of what that’s like.”
Dr. Yolanda Becker, assistant professor of surgery who performs transplants, noticed that Cordes had a talent for finding veins. “I tell the students, ‘you have to feel them; you just can’t look.’ For Tim, that was not an option.”
Becker soon became one more member of Tim Cordes’ fan club. “He was a breath of fresh air,” she says. “He appreciated the fact people took time with him to feel the pulse, feel the grafts, feel where the kidneys are. He asked very good questions.”
Cordes’ training included observing surgery, helping treat psychiatric patients at a veteran’s hospital, and traveling beyond the hospital walls to the rural corners of Wisconsin.
For six weeks, he experienced the front lines of medicine with Dr. Ben Schmidt, accompanying him from house calls to the hospital, tending to everything from heart trouble to chicken scratches.
They took time, too, to indulge Cordes’ passion for cars. Cordes, who reads Road & Track and Car and Driver magazines faithfully, is a Porsche fan. Knowing that, an internist in Schmidt’s clinic brought her husband’s metallic gray Turbo 911 to work one day. Schmidt took the wheel, roaring down the road with Cordes in the passenger seat, his keen hearing detecting the sounds of the valves opening up.
Cordes also enjoys camping and canoeing with his fiancée, Blue-leaf Hannah (her exotic first name comes from a character in Centennial, a James Michener novel). They met when both interviewed for medical school.
“I was just mostly curious how he was going to do it,” she says. “I must have asked him a million questions.”
“I figured she was just sizing up the competition,” he teases.
She was impressed. “He was smart and pretty modest,” she says.
“Handsome, too,” he adds.
“Yes, handsome,” she laughs.
They began dating and will marry this fall. It’s a match made for Mensa. Hannah is now in medical school. She already has a Ph.D. in pharmacology; her dissertation was on a human protein implicated in heart disease called thrombospondin.
“Too long for a Scrabble game,” Cordes jokes.
The two have talked about starting a research lab together someday.
Looking back on medical school, Cordes says he savored the chance to help deliver babies and observe surgery, things he’s probably not going to do again. “I just made it a point to treasure them while I had them,” he says.
He once thought he’d become a researcher but is now considering psychiatry and internal medicine. “The surprise for me was how much I liked dealing with the human side,” he says. “It took a little work to get over. I’m kind of a shy guy.”
Cordes plans to attend graduation ceremonies in May. For now, he’s humble about his latest milestone. “I might be the front man in the show but there were a lot of people involved,” he says. “Everybody was giving a good effort for me and I wanted to do right by them.”
NOTE: The Blind Doctor: the Jacob Bolotin Story, by Rosalind Perlman, is available from the NFB in regular print for $19.95 plus shipping and handling, and for $24.95 in large print. For information about how to place an order, please contact the NFB Independence Market at <[email protected]> or (410) 659-9314, extension 2216. The book is also available electronically to Bookshare members for downloading from <www.bookshare.org>.
Close to Home
News from the NOPBC and the NFB
The Hill Will Be Alive: with the sounds of hundreds of advocates, both blind and sighted, voicing their concerns to their congressmen and women. The 2008 Washington Seminar is slated to run from January 28-31 and promises to be another great opportunity to enjoy the benefits of democracy: personal access to our elected officials. Keep your calendar clear and check the NFB Web site, <www.nfb.org>, in the coming months for updated information and legislation that will affect you and your blind child.
Shop for Independence
Independence Market: Now that you’re finished with the back-to-school shopping rush, it’s time to start thinking about that ever-expanding Christmas list. Even though Christmas is still a couple of months away, it’s never too early to browse the NFB store, Independence Market. Here you will find all kinds of accessible products including canes; activity books; raised line coloring books; talking crayons; talking watches; soccer balls, volleyballs, and basketballs containing bells for audio cues; playing cards; blocks; magnetic letters and numbers; alphabet placemats; a colorful, take-apart, topographical puzzle map of the United States; magnetic backgammon and many more fun, accessible products for the whole family. Simply visit <www.nfb.org/nfb/Independence_Market.asp> or visit <www.nfb.org/nfb/JtBLibrary.asp> to view the Jacobus tenBroek Library Resource Guide and browse the catalog. You may also call (410) 659-9314, extension 2341, to order or to request a catalog.
Go Green Safely
National Federation of the Blind on Clean Car Acts: It’s hard to argue against saving money at the pump and saving the environment at the same time. And the National Federation of the Blind will not be making that argument. However, as many blind leaders, educators, scientists, and people with common sense have pointed out, the current push towards cars that rely on silent electric power could prove deadly to pedestrians--especially blind pedestrians. One solution would be for the cars to emit some kind of sound to allow all pedestrians to use audio cues to travel safely. President Maurer recently said, “The National Federation of the Blind is not opposed to more efficient and environmentally friendly automobiles. Pedestrian safety, however, must be taken into account when these vehicles are designed and manufactured.”
The Revolution is [still] Here: And it’s more affordable than ever. The Kurzweil–National Federation of the Blind Reader is accessible, portable, and available for a reduced cost of $2,595. The Reader converts the content of printed documents into clear synthetic speech. It reads most printed documents, address labels, package information, and instructions with ease, storing thousands of printed pages at a time. Scan, read, and discard pages; store them for later reading, or transfer to a computer or Braille-aware PDA. It also has the ability to differentiate between different U.S. currency denominations, no matter how the bill is facing. So join the thousands that have already benefited from this life-changing device. Visit <www.knfbreader.com> or call (877) 547-1500 for information on how to purchase the device.
Blind Science Strengthens Its Foundation for the Future
The First-Ever NFB Youth Slam: This August, two hundred blind youth and seventy-five blind mentors arrived in Baltimore for a week of science, engineering, and fun. Students from all over the country launched weather balloons and rockets, dissected sharks, and built bridges, windmills, astronomical models, and even a functional hovercraft. Some students even experienced journalism first-hand, as they collected stories, interviews, and podcasts of the events for the week. You’ll find those and more information about this innovative and life-changing event at <www.blindscience.org>.
Some Tonic for Those Growing Pains
Useful Teen Advice: While every parent may look for that miracle solution to help guide them through the teenage years, some sighted parents feel they have an even harder time relating to their blind son or daughter as they enter into these crucial years. This is when advice from other blind people proves especially useful as teens develop social skills, begin dating, and develop more and more independence. Check out some past issues of Future Reflections that sought to address some of these concerns. Of special note are “About Dating, Blindness, and the ‘Little Things’ of Life” (Volume 3, Number 1); “Fitting in Socially” (Volume 13, Number 3); and “The Summer of Independence” (Volume 18, Number 1). All of these back issues can be found online at <www.nfb.org/nfb/Future_Reflections.asp>.
Around the Block
Helpful Items from Here and There
Please note: The NOPBC is not responsible for the accuracy of the information; we have edited only for space and clarity.
Channel Your Inner Perry Mason
Represent Your Child: Recently the Supreme Court ruled in favor of Ohio parents who sued their school district over their blind child’s special education needs under the Individuals with Disabilities Education Act (IDEA). This decision was a landmark case where the Court decided that parents can represent their children in court and are not required to hire a lawyer for the child. As a result, parents are no longer denied access to fair legal proceedings if they cannot afford legal representation. You can read the decision at <www.supremecourtus.gov/opinions/06pdf/05-983.pdf>.
New Course Offered at the Hadley School for the Blind
This Notice Comes Courtesy of Hadley School for the Blind. “Hadley’s new course ‘Parenting Children with Multiple Disabilities’ presents skills and techniques for furthering development in a child with multiple disabilities. This course is available in large print and online. Topics include an examination of basic concepts of learning; a description of professionals who may work with their child; a discussion on communication, social development, and behavior issues; and an exploration of self-help skills and orientation and mobility. This course is tuition free and open to students in Hadley’s Family Education Program. To enroll in this course, visit us on the Web at <www.hadley.edu>.” You may also contact the Hadley School for the Blind by calling (800) 323-4238.
Keep the Fridge Closed!
LeapFrog Fridge Phonics™: This toy from LeapFrog Enterprises, Inc. is recommended by a reader as a great way for young blind children to recognize print letters. The toy consists of a battery operated reader that is attached to a surface via magnets, as well as magnetic letters that can be identified tactilely. When the letters are placed on the reader and a button is pressed, the reader announces the letter’s name and plays a song about the sound the letter makes. An extension of the basic Fridge Phonics™ set, the Word Whammer™ uses the same basic concept, but instead of single letters, allows children to place three letters into a magnetic reader to form words. The reader recognizes over 325 words and then encourages the child to make rhyming words. The Fridge Phonics™ Magnetic Letter Set sells for a price of $19.99 and contains the reader and twenty-six letters. The Word Whammer™ sells for $24.99 and contains the expanded reader and thirty-two letters. More information can be found at <www.leapfrog.com> or by calling (800) 701-5327. To help your child associate the print letters with Braille, simply place a Braille label on the large magnetic letters.
Sifting Through the IEP Process
The following advertisements are courtesy of Nolo legal books and software. The Complete IEP Guide maps the process from start to finish, providing support for dealing with bureaucratic difficulties and helpful advice for custom-fitting your child’s IEP. Whether your child needs six months of speech therapy, or special education ‘K through 12,’ this book will help you steer clear of pitfalls and get meaningful results.
Nolo’s IEP Guide: Learning Disabilities is specially designed for the parents of children with learning problems such as dyslexia, aphasia, dyspraxia, and visual or audio processing disorders. You’ll learn how to identify a learning disability, qualify your child for an IEP program, and choose the best programs and services down the line.” To order, visit <www.nolo.com> or call (800) 728-3555.
Everythingbraille: A Resource Guide for Parents and Teachers: A one-stop Braille resource compilation, Everythingbraille lays out all the agencies, organizations, and companies that produce Braille, and adaptive technologies or have some sort of interest in Braille advocacy. Topics covered include an overview of Braille, Braille publications, adaptive technology, tactile graphics, Braille fun and games, and Braille music. The print book is $5.00 and can be ordered from National Braille Press, but you may also access it for free online at <www.everythingbraille.com>. To order, call (888) 965-8965, or write to National Braille Press, 88 St. Stephen Street, Boston, Massachusetts 02115.
American Action Fund for Blind Children and Adults: Another Braille resource you shouldn’t miss, the American Action Fund provides two important programs through which you can receive Braille books free of charge. The first program is the Kenneth Jernigan Lending Library, headquartered in Tarzana, California. The library contains over forty-thousand Braille books that are available on loan for a period not to exceed three months. This program offers books ranging from those at the preschool reading level to young adult readers. The other program is the American Action Fund Free Braille Books program, based in Baltimore, Maryland. Through this program, you can choose any combination of three popular book series. The books are free, and are yours to keep. You make your selections on the application and then mail the application to the address provided. These books cater to readers at a second to fifth grade reading level.
Both programs make use of free matter for the blind postage, so you don’t even have to pay shipping costs. Simply visit <www.actionfund.org> and find the program in which you wish to enroll. Both applications are available online, or you may call the relevant program headquarters to receive an application by mail. For the Kenneth Jernigan Lending Library, call (818) 343-2022 and for the Free Braille Books Program, call (410) 659-9314, extension 2361.
Braille-A-Wear: This fall, be sure to wear your Braille on your sleeve and check out this clothing line begun by a mother and her blind daughter early last year. In an attempt to raise Braille awareness and at the same time make fashionable, durable clothes, Deb Kersey-Tagoe and her daughter Bronwen created Braille-A-Wear. Using 3-D embroidery, Braille-A-Wear produces not only short and long sleeve t-shirts, but also baby bibs, hats, totes, pins, and pottery.
Visit <www.braille-a-wear.com> or call (717) 671-1184 to order, or for more details about products and about Braille in general.
Accessible Testing Materials: Before you begin to think about the accessibility issues of college, make sure that your children have the testing materials they need to get into the school of their choice, with the best opportunity for financial aid and scholarships. Visit <www.collegeboard.org>, click on “For Students,” “College Board Tests,” and then click on “Students with Disabilities.” Be sure that you look into these options well in advance--some materials may take up to a year to pass through the process.
Braille Slate Pals
“I have a student who is transitioning from print to Braille. If he could exchange letters with another Braille reader I think that would greatly motivate him to learn.”
“My 12-year-old daughter is the only blind child in her school.
She would very much like to correspond with another blind girl her age who may
share some of her concerns about fitting in.”
“Ever since my son read about Louis Braille he has been fascinated with the Braille system. He wants to find a blind boy his age (ten) so they can write Braille letters back and forth. Can you help us?”
These are only a few examples of the Slate Pal requests we receive throughout the year. Slate Pals is a program for children in grades K-12 that matches students who want Braille pen pals. The program is sponsored by the National Organization of Parents of Blind Children (NOPBC) of the National Federation of the Blind (NFB), and is available, free of charge, to children around the world.
Slate Pals enables children who are blind to correspond with one another in Braille. It also finds blind pen pals for sighted children who are interested in learning the Braille code.
Slate Pal requests have come to us from all fifty states and most of the Canadian provinces. We have also received requests for Slate Pals from many nations overseas, including Taiwan, South Africa, Denmark, Hungary, Uganda, El Salvador, Germany, Australia, and Great Britain. In matching Slate Pals the primary considerations are age range, gender, and interests. We also try to match each prospective Slate Pal with someone who lives in a distinctly different geographic locale.
For more information, or to request a registration form, call
(410) 659-9314, extension 2361. You can also register online at <www.nfb.org/nfb/NOPBC_Slate_Pals.asp>.