Vol. 10, No. 2
Summer, 1991
Barbara Cheadle, Editor
Contents
In Memory of Charlotte Verduin 1
by Barbara Cheadle
Cherranne 2
by Charlotte Verduin
Canes and Preschoolers: The Eight-Year Revolution 4
by Barbara Cheadle
A Letter to Orientation and Mobility Specialists 6
Orientation: What Is Your Role? 8
by Eileen Rivera
Why She Walked Out On Me 11
by Zach Shore
A Cane In Our Lives 13
by Carol Castellano
Slate-Mates: A Pen-Pal Program for Blind Youth 15
Dianne Millner to Attend National Library Conference 16
A Meditation on Moore's Mountain 17
by Ramona Walhof
Kids Korner 22
* Student Division, National Federation of
the Blind
* A Role Model for the Blind:�Blind Water Skier�
* Being Blind (My True Story)
The Blind Men and the Elephant: Educating the Public 23
by Ronda J. Del Boccio
Jude's Kids 25
by Jude Lincicome
The Committee on the Blind Multiply Handicapped Child:
What Is
It and What Does It Do? 29
by Colleen Roth
Parenting Our Blind Children 30
by Shirley Baillif
The Braille 'n Speak: Benefits for the Busy Professional
and a
Helpful Tool for Learning Braille 32
Betsy Zaborowski, Psy.D.
National Braille and Technology Center Opens (photo) 33
Hear Ye! Hear Ye! 34
IN MEMORY OF
CHARLOTTE VERDUIN
by Barbara Cheadle
Early in April the National Center for the Blind got a call from
Cathy Randall, a federationist in Illinois, with some sad
news�Charlotte Verduin, second vice president of the Parents of
Blind Children Division, had died of diabetic complications on
April 7, 1991.
Charlotte's health had not been good for several years, but she
never slacked in her determination to get her daughter Cherranne
(who is blind) the best education possible, nor did she waver in
her dedication to the National Federation of the Blind. When
complications of diabetes made it impossible for her to walk much,
she came to NFB national conventions in a wheelchair. Her cheerful,
indomitable spirit was an inspiration to all who knew her.
I remember when Charlotte atttended her first national convention
of the National Federation of the Blind in 1985. Her daughter,
Cherranne, was about five years old. At that time blind children at
conventions were still something of a novelty. Parents were just
beginning to discover what a gold mine of information and role
models the National Federation of the Blind is for parents and
blind children. I recall Charlotte's telling me that she was so
impressed with the people, philosophy, and attitude she encountered
at her first convention that she made herself a promise to bring
Cherranne to every annual National Federation of the Blind
convention. And, despite her nagging health problems, Charlotte
kept that promise. Cherranne has grown up with blind friends,
mentors, and models�a rarity for most blind children.
Although Charlotte was soon elected to an office in the Parents of
Blind Children Division, her willingness to work was never
contingent upon holding some title. When something needed doing
that she could do, she did it. In the six years that she was a
member of the National Federation of the Blind she published
articles in Future Reflections; the Braille Monitor; the NFB of
Illinois newsletter; and the Voice of the Diabetic, a publication
of the Diabetic Division of the National Federation of the Blind.
She had been a Headstart teacher for a number of years (as long as
her health allowed her to work) and at the time of her death was
working on a master's thesis about echolalia (verbal imitation) in
blind children.
Charlotte is survived by her daughter Cherranne, her parents Jacob
and Bethy Verduin; a brother, Lans Verduin; sisters Leslie and Jan
Verduin; and sister and brother-in-law Holly and Dana Heren (who
are now Cherranne's guardians and acting parents). Charlotte will
be sorely missed not only by her family, but by her friends and
colleagues in the Parents of Blind Children Division of the
National Federation of the Blind.
CHERRANNE
by Charlotte Verduin
Editor's Note: Charlotte Verduin delivered the following
address July 2, 1988, during the Parents of Blind Children Seminar
at the 1988 national convention at the Hyatt Regency Hotel in
Chicago. It was originally published in the Braille Monitor and is
reprinted in this issue as both a memorial to Charlotte and as a
testimony to her effectiveness as a mother and a leader in the
National Federation of the Blind Parents of Blind Children
Division.
My daughter, Cherranne, is eight years old. She enjoys listening to
Alf on t.v., reading, and roller skating. She reads, and she does
three-column addition and subtraction. She goes to school at our
neighborhood public school. Cherranne has been blind since birth
due to Retinopathy of Prematurity. That's Retrolental Fibroplasia
in the old language. I lived through her infancy, babyhood, and
preschool years, so that makes me an expert. How expert may be
judged by the product. I hope my ideas that follow will help you in
shaping your own best products. First, you need to think positive!
I decided to have a �can do� baby even before I took her home. This
was a mental outlook, a philosophy that became an approach; and
even a baby picks up on confidence. There are two tips to increase
confidence and decrease anxiety. First, learn about child
development. It's a natural topic of conversation among family and
friends. There are good books to help you: one called The First
Twelve Months and another entitled Infants and Mothers. Both books
include easy-to-read charts and show the sequence of your major
developmental milestones. I found Parents' Magazine easy to read
and very helpful, and it covers age ranges up to the teen-age
years.
Second, recognize that each child's timetable will be right. There
is no �normal� child. Each child will progress through the many
tasks of learning at an individual pace. The same child will learn
some things fast and some things more slowly. In the mythical
�normal� child, this is referred to as �ranges of accomplishment.�
Such children are referred to as �precocious,� �on task,� or �late
bloomers.� Because our children are blind, �precocious� and �on
task� are usually overlooked. We don't have late bloomers; our
children are �delayed.� Don't buy into this negative outlook.
The National Federation of the Blind emphasizes ability through
alternative techniques. I have found that in parenting there are
alternative techniques too. There is a popular statistic out there
that states that 70 to 80 per cent of learning is visual. If that
has any value, to me it only shows the need to augment or replace
visual methods with an alternative multi-sensory approach. How to
do that? In infancy, Cherranne had an �exciting crib.� I paid
attention to the texture of her toys. For example, she had two
turtles... one was solidly stuffed terry cloth, bumpy and rough;
the other was loosely stuffed and crocheted, soft and clutchable,
good for sinking little fingers into and shaking! Cherranne's crib
had bells, squeaky toys, a chime ball, a �happy apple,� and a music
box. The chime ball and happy apple are both round and make noise.
But one has a stem and leaves and a deep bell, and the other is
smooth and round and has a tinkly chime.
I filled her world with smells and odors... the stink of a new
plastic toy hammer, a doll stuffed with potpourri. Bath time, meal
time, and changing time are all full of smells, some pleasing, some
not so pleasing. Sensory awareness on the parent's part shows the
child how rich the world is. It leads the baby to interact with his
or her surroundings. You can improve nursery rhymes, songs and
games with actions. Baby doesn't have to see you reaching your arms
up �so big�; you stretch baby's arms out��so big.� It's the same
game, but it's much more useful.
Talk about daily activities��Here comes the t-shirt over your head;
first put in your left arm, now put in your right arm.� These
thoughts help to organize the baby's thoughts. The baby starts to
look forward to things happening and the order in which they
happen. The key in infancy, I thought, was interaction, not
reaction. Bring your baby's attention to the world and spark that
natural curiosity that babies have.
For toddlers, encourage exploration. You can utilize the child's
trusting nature at this time to attempt new physical activities. Be
brave, and teach your child to be brave. Toddlers love to help and
imitate. Explain how to do things and get them involved. Toddlers
can pick up toys and bring them to you. Toddlers can read along and
turn pages with you. Every toddler under creation discovers the
favorite toys�pots, pans, and lids! Mixing bowls are really fine
too. While they are having a thrilling time �doing it myself,� they
learn all kinds of things about in and out, up and down, big and
little, and so on.
Continue talking about daily activities. More and more is being
understood. Cherranne learned to do many things as we talked over
the dishes. High up on a stool, wearing an apron that got soaked
anyway, reaching into the soapy water, rinsing in the clear water,
and stacking in the drainer, we noticed the differences between
cups and plates and saucers, forks and spoons. She started
counting; she even started adding before she was three years old.
She took one fork in one hand and one fork in the other hand. How
many forks did she have? She had two. At this age the child
recognizes order, sequence, and relationships. The key now is
interaction with more purpose towards independence in daily living
skills, social skills and mobility.
At preschool age, it is time for programs. Now is the time for
involvement with other children. Infants and toddlers learn a lot
from their parents and their family environment. But preschoolers
begin to learn more and more from their playmates. Preschoolers are
very proud to enlarge their world. It may begin about age two and
never ends. It gets very intense at preschool ages. Answer your
children's questions, and even sometimes before they ask questions.
Also, turn the question around on the child, encouraging the child
to use language to express his/her thoughts about the world.
Preschool is the time to begin Braille... learning to move from
left to right on a page, going from the top to the bottom of a
page, learning to turn pages in a book, recognizing simple shapes.
Many preschoolers can learn to Braille their names at the same time
as their sighted peers learn to write.
This brings me to a point of advice to parents. You may not want to
hear it, but I think it is extremely important for you to learn
Braille. I don't know how anyone can help a child go through school
in any subject if the parent doesn't know enough Braille to catch
the children's errors and help them out. Sighted parents can
quickly learn Braille by sight. I took lessons for six weeks to
learn Braille. The Library of Congress has a self-help Braille
instruction book you can borrow from your regional talking book
library. Cherranne is now in third grade, and as she learns a new
sign in school, I learn it right along with her. I have enough
basic understanding of Braille to keep up with her.
Preschool blind and legally blind children should absolutely begin
to use a long white cane. There are two essential rules for cane
travel. The first is the child's rule... �The tip stays on the
ground.� If the handle is in the child's hand, and the tip is on
the ground, you are never going to go wrong. The parent's rule is,
�The cane goes everywhere and the child uses the cane everywhere he
or she goes.� As Barbara Walker says, it's a whole lot easier to
say it than to live it!
The key again at this age is interaction, but at this age more
often child-initiated. We can produce independent, competent blind
children. For society to recognize their value, we have to sell our
product. We have to brag on our children and believe in your
child's ability to be independent and give him or her every
opportunity to advertise.
CANES AND PRESCHOOLERS
THE EIGHT-YEAR REVOLUTION
by Barbara Cheadle
In 1980 you couldn't buy a white cane for a preschooler for any
amount of money. They didn't exist. I know because we tried to find
one for our two-year-old son. My husband ended up cutting down an
adult-size cane for our son to use. The adult handle was too large,
so he made a smaller one using layers of electrician's tape.
There weren't any canes because there wasn't any demand. There
wasn't any demand because the Orientation and Mobility (O & M)
profession didn't believe in giving canes to young children. O & M
professionals had been taught how to teach adults, and children
were taught the same way�as if they were just smaller versions of
adults. Naturally, this meant most children couldn't meet the O &
M standard for cane "readiness." Occasionally a bright, precocious
child would get a cane in elementary school, and very rarely a
preschooler would get a cane, but almost always blind youth had to
wait often until fifth or sixth grade�usually later�to get one.
But by 1982 this was beginning to change. 1982 was the year that
the National Federation of the Blind first offered child-size white
canes for sale (see the July, 1982 issue of the Future Reflections,
formerly the NFB Newsletter for Parents of Blind Children). To the
best of my knowledge, these were the first mass-produced children's
canes in this country. About the same time Fred Schroeder�a blind
O & M instructor, an educator, and a leader in the National
Federation of the Blind�began giving canes and lessons to all blind
children as soon as they entered school in the Albuquerque, New
Mexico, school district. (He supervised the Albuquerque Low
Incidence Programs from August, 1981 through June, 1986. See the
article, "A Step Toward Equality: Cane Travel Training for the
Young Blind Child," in the Winter, 1989 Future Reflections). His
success raised doubts about the traditional approach to cane travel
for kids and gave the professionals a new model to follow. Then,
in 1983, while Mr. Schroeder was in the middle of implementing his
program, the Parents of Blind Children Division of the National
Federation of the Blind began distributing the video, "Kids With
Canes." This video, originating in Nebraska, showed innovative
approaches to teaching cane travel to youngsters as young as five.
Both the New Mexico program and the "Kids With Canes" video set the
stage for encouraging even earlier use of the cane. The following
year, 1984, Future Reflections printed an article which openly
promoted canes for preschoolers, "Canes and Blind Preschoolers,"
March/April/May, 1984. Since then Future Reflections has featured
a steady number of articles which focus on cane travel for young
blind children; articles such as: "God, Table Manners, and
Independent Travel: A Mother's Viewpoint"; "We Have Just Begun to
Fight;" "Joseli;" "One White Cane Saga;" "Dan;" "Cane Travel for
Preschoolers;" and "Parental Attitudes Can Make the Difference."
Although there were a few O & M instructors eager to experiment
with this new approach, the O & M professionals on the whole
fought this trend�they wanted nothing to do with this grass-roots
movement. (And that is what it is. Information and encouragement
came from the National Federation of the Blind, but parents�as it
should and had to be�took the lead.) Perhaps the professionals felt
threatened or inadequate to the challenge. Certainly some were
downright offended to think that non-professionals (parents! blind
people!) could actually teach them something about O & M. Please do
not misunderstand me. There are, and have been from the beginning,
O & M instructors who are open-minded and earnest in their desire
to form a partnership with blind consumers and parents. But the
overall tone has been one of arrogance and elitism.
Nevertheless, this revolution in the approach to cane travel and
children, as led by parents and nourished by the National
Federation of the Blind, could not be denied or turned back. And
the reason is in the children themselves. Invariably, young blind
children love the white cane. The joy and eagerness with which they
accept the cane is sufficient evidence alone of the need to make
this a standard practice.
Maybe that is what finally turned the tide. Although there is still
resistance from individual instructors and institutions, there is
a new tone of acceptance (although cautious and usually overlaid
with tedious professional jargon) within the O & M field. What
evidence do I have for this judgement? There are many signs and
indications�such as the warm reception given to the 1989 Handbook
for Itinerant and Resource Teachers of Blind and Visually Impaired
Students. Written by Doris M. Willoughby and Sharon L. M. Duffy and
published by the National Federation of the Blind, it includes four
chapters on teaching cane travel to children from preschool age on
up. The mild reaction to what had once been considered an extremist
approach, was one sure sign that the revolution was coming to an
end. But the surest evidence came in the form of a catalog. In the
"New Products" section of its 1990-91 aids and appliances catalog,
the American Foundation for the Blind�the granddaddy of the
blindness establishment�offers childrens cane's in sizes from 24"
on up. It seems appropriate, somehow, that the end of the
revolution should be marked by the same action which marked its
beginning when, eight years ago, the National Federation of the
Blind was the first organization ever to sell mass-produced
child-size white canes (24" and up).
Although there will still be individual battles and skirmishes as
parents slug it out with die-hard O & M instructors, it is only a
matter of time before it will be standard practice to give canes to
preschoolers. However, as we have learned from the recent war in
the Middle East, it isn't good enough to win the war; one must then
win the peace.
Parents will now be faced with a whole new set of problems and
questions. Most of these are not new to the adult blind, but they
will be new to parents. Do parents have to wait for permission from
an O & M instructor to get a cane? What if the parents and the
instructor disagree about the type of cane or its length? Should
you wait to get a cane until your child can get O & M lessons
(however long that may take), or should your child have a cane
right away? Can blind people safely teach or demonstrate cane
travel to children? What do you do if your school can't find an O
& M teacher, or if the teacher can only come once a month? What do
you do if you get a poor O & M teacher and your child begins to
lose confidence, not gain it? Most of these questions can be boiled
down to these fundamentals �What do the professionals really
believe about blindness? Does your child's O & M teacher truly
believe that a blind person can learn to travel safely and
independently, or does he or she have a limited definition of
independence and low expectations for your child?
As we straddle the end of one era and the beginning of a new one in
our approach to independent mobility for blind children, parents,
more than ever, need information and guidance. In this issue there
are no fewer than four articles which address independent travel
for the blind ("A letter to Orientation and Mobility Specialists
," "Why She Walked Out on Me," "Orientation: What is Your Role?"
and "A Cane in Our Lives.") In them are a few straightforward
answers (Yes, competent blind people can safely teach and
demonstrate independent mobility; and yes, it is best to get a cane
for a child as soon as possible, even if instruction is not yet
available.); plenty of inspiration; and best of all, a
philosophical blueprint to follow for the mobility-related problems
that will have to be solved individually by parents and blind
youth.
A LETTER TO ORIENTATION AND MOBILITY SPECIALISTS
Editor's Note: The following letter exchange took place
as a result of the Winter/Spring, 1990, Future Reflections article,
"Cane Travel for Preschoolers."
April 13, 1990
Future Reflections
1800 Johnson
Street
Baltimore, Maryland 21230
Dear Sirs:
An article in your Winter/Spring issue entitled "Cane
Travel for Preschoolers?" was certainly thought-provoking. As
orientation and mobility instructors, we agree that preschoolers
can benefit from the use of a long cane, and know many other
professionals who also concur.
We do, however, worry about the advisability of allowing
a child to use a cane without any instruction or monitoring by a
trained professional. Without such instruction, motor patterns may
develop which will be extremely difficult or impossible to "refine"
later in the child's life. Poor motor patterns lead to mobility
that is neither safe, efficient, or graceful.
Parents may make excellent monitors once they know which
patterns to encourage, and in partnership with the orientation and
mobility instructor, should be seen as a vital component in their
child's acquisition of travel skills.
Yes, canes for preschoolers can enhance many aspects of
their lives. Appropriate instruction maximizes the benefits in
motor development, sensory development, and cognitive development
that increased travel opportunities provide.
Tom Barnard
John Zimbelman
Parent/School Advisors
Idaho State
School for the Deaf and the Blind
May 30, 1990
Mr. Tom Barnard
Mr. John Zimbelman
Parent/School
Advisors
Idaho State School for the Deaf and Blind
Dear Mr. Barnard and Mr. Zimbelman:
I have your letter of April 13, and I appreciate your taking the
time to share your thoughts about the "Cane Travel for
preschoolers" article in the last issue of Future Reflections. It
is a pleasure to hear from orientation and mobility instructors who
are providing canes and instruction to preschoolers. As you have
pointed out in your letter, there are so many positive benefits to
the early introduction of cane travel.
I understand your concern about children getting good instruction
in using the cane. It would be ideal if every blind child in this
country could have prompt, adequate training in all the necessary
special skills of blindness, including cane travel. Unfortunately,
this simply does not happen. Shortages of funds, teachers, and
outmoded attitudes about blindness all contribute to many, many
situations where parents of blind children� especially very young
children�simply do not have access to good professional guidance
and instruction.
Parents often face a difficult dilemma. They can wait and do
nothing until the system can, or will, provide orientation and
mobility. (In which case the older child will most certainly have
developed a pattern of dependency and undesirable motor habits,
such as a slow, awkward "duckwalk" kind of gait. On top of all
this, the child is likely to have the typical adolescent reaction
to using the white cane (such as fear, embarrassment, and
rejection.) Or the parents can get the child a cane right away and
trust that the confidence, positive attitudes toward the cane, and
patterns of independence which early use of the cane promotes, will
outweigh the disadvantage of a lack of professional instruction.
Because we know children cannot be put on hold while our society
finds ways and means to increase the quantity and quality of
services to blind children, the National Federation of the Blind
has developed literature for parents and professionals which can
help bridge this gap. I have enclosed past issues of Future
Reflections which contain articles about cane travel and the young
child. One article contains specific do's and don't's for parents
who wish to encourage independent travel; another one describes
what a parent should know and do so that the child will be ready
for formal cane travel lessons; and yet another one has actual
photographs and descriptions of cane techniques. The most current
as well as the best and most complete instructional guide to cane
travel for preschoolers and the young child is contained in the
newly published Handbook for Itinerant and Resource Teachers of the
Blind and Visually Impaired. (A review of this book is in the
Future Reflections Winter/Spring, 1990, issue.)
None of this literature is, of course, a substitute for good formal
cane travel instruction which emphasizes positive attitudes and
builds confidence as well as skills. However, it can, as I said,
help bridge the gap created by inadequate or even nonexistent
services.
Again, I truly appreciate your comments. I am sending a copy of our
correspondence to Mrs. Ramona Walhof, President of the NFB of
Idaho. I am sure that she, too, would be pleased to know of your
views regarding blind preschoolers' use of the long white cane.
Cordially yours,
(Mrs.) Barbara Cheadle, Editor
Future
Reflections
National Federation of the Blind
ORIENTATION: WHAT IS YOUR ROLE?
by Eileen Rivera.
Editor's Note: The following article is reprinted from
the Fall, 1990, issue of theBraille Spectator, a publication of the
National Federation of the Blind of Maryland. The author, Eileen
Rivera, is the very capable president of the Greater Baltimore
Chapter of the NFB of Maryland.
Perhaps no single skill contributes more to the success and
self-confidence of the blind than does independent travel. Hence,
the availability of high quality travel training is essential.
Above all, good orientation and mobility (O & M) training enables
blind persons to "get ahead", to confidently travel freely and
independently anytime, anywhere.
The appropriate roles, responsibilities, and qualifications for
professionals in the orientation and mobility field have been hotly
debated over the years, remaining in the forefront of the blindness
literature. In July, 1990, the Metropolitan Washington Orientation
and Mobility Association Newsletter printed Dona Sauerburger's
thoughtful commentary "Orientation, What Is Our Role?", written in
response to Gwen Nelson's piece "Who is Able to Teach?", published
in the Braille Monitor, May, 1990. It is clear from Ms.
Sauerburger's article that she is a dedicated professional who
regularly gets her clients out traveling independently.
As a blind member of AER, trained by an experienced blind travel
instructor, I am responding to Ms. Sauerburger's request for
additional perspectives and philosophies from visually impaired
travelers. I like to compare O & M instruction to driver education.
Each conveys an important set of skills. One need not have an
advanced degree to drive safely or provide quality driving
instruction. One need not have an advanced degree to travel safely
or provide quality O & M instruction. Once trained, drivers can
find their own way and ask directions when they get lost. Likewise,
once properly trained, blind travelers can find their own way and
ask directions when they get lost. Drivers rarely depend upon their
instructors for orientation to a new neighborhood, nor do they
require additional instruction for refining their driving skills.
Likewise, well-trained blind persons need not depend upon their O
& M instructors for orientation to a new setting, nor for
refreshing their mobility skills since independent travel has
become an integral part of their lives.
What makes good orientation and mobility training? Ms. Sauerburger
noted that good training is based on client choice and client
responsibility. Good O & M training also teaches students how to
gather pertinent information and orient themselves. A critical
component of high quality training not mentioned by Ms. Sauerburger
is the introduction of the student to competent blind travelers,
individuals who can serve as mentors and role models.
The sad truth is that good travel training is the exception rather
than the rule. Barriers exist. The worst of these barriers are
attitudinal. First, consider the agencies. Many vocational
rehabilitation agencies have low expectations for their blind
clients. They do not expect them to become independent travelers.
Second, there is a shortage of O & M instructors, so clients are
not receiving sufficient training. Third, despite a severe shortage
of certified travel instructors, an important source of new
instructors�blind people�is systematically being overlooked.
Finally, increased concern about professional liability obstructs
good client-instructor relations, further impairing comprehensive
travel training.
Generally, O & M services are provided in a haphazard and piecemeal
fashion. Consider the "get by" attitude of many agencies for the
blind. Priorities are shifted away from the basic skills of
blindness toward the "quick fix" solutions, as is the custom in
Maryland. The Maryland Department of Vocational Rehabilitation
arbitrarily limits the level of O & M instruction to not more than
20 hours. With training time so restricted, instructors forego
comprehensive instruction. Transferable skills remain untaught, and
instructors are forced to reduce O & M training to a series of
"safe" and well-defined travel routes. Such an approach rarely
results in the self-confidence essential to independent travel.
Since piecemeal training will likely remain the norm for years to
come, the question arises as to how the professionals should
respond when a blind person returns to them for additional
orientation. I believe these instructors have the duty to provide
the requested orientation. Additionally, really good instructors
will seize this opportunity to provide additional independent
orientation skills that will foster real independence and
self-reliance in the future.
Ms. Sauerburger questioned whether a blind travel instructor would
have encountered the same difficulties as the sighted one in
orienting Ms. Nelson to her new neighborhood. I expect that each
instructor could effectively provide the requested orientation (as
well as any mobility training) despite the unfamiliar neighborhood.
The outcome would most likely depend upon the instructor's skills
and creativity, not the instructor's visual acuity.
Ms. Sauerburger raised the issue of professional liability, a
significantly worrisome topic for professionals in the field.
Specifically she asks: "Does the traveler take responsibility for
his or her own orientation (including accepting liability if
something goes wrong), or is the O & M instructor still liable if
an accident happens after having oriented a traveler? If this
depends on the skill level of the client, then whose responsibility
is it to determine what the client's skill level is? If Ms.
Nelson's instructor did not discourage her from taking the shorter
route and she is injured crossing the busy street, would the
instructor be considered responsible?"
"I have heard some O & M instructors express the opinion that only
a qualified instructor should provide instruction to blind people,
and I have talked with several professionals (not O & M
instructors) who would not orient a blind person because they might
be held liable if something went wrong."
My research has yet to reveal a single liability claim against an
O & M instructor for an accident occurring after training was
completed. In fact, there is no evidence that blind persons are
involved in a disproportionate share of accidents, nor that these
accidents are attributable to O & M instructors. Holding an
instructor liable for such an accident seems as remote as finding
a driver's education teacher responsible for an accident involving
a former student.
I have heard professionals hide behind the liability issue,
refusing to provide a long white cane until a student has completed
the prerequisite training in sighted guide and protective arm
techniques. Their rationale is that providing a cane too early will
promote a false sense of security and encourage the traveler to
expose himself to inordinate risk outside the home. My experience
is that rudimentary cane skills are superior to no cane at all. For
centuries visually impaired persons have found canes of value even
without any formal training. This is not to say that excellent O &
M skills can be reduced to a mere tapping of a long white cane.
However, such a simple technique, regardless of the shape of the
arc, immediately promotes safety, not risk!
While I know of no legal action against an O & M instructor, I have
witnessed increased defensive actions on the part of instructors.
Even Ms. Sauerburger needs to document clearly a client's choice of
an unsafe travel technique and route:
"I don't consider it my responsibility to be making decisions about
which is the best route�travelers usually know their own abilities,
limitations and preferences. If I observe anything that I consider
unsafe about their travel techniques or the routes, I inform them
(and document in my notes that I informed them), but I feel that
they will decide their own priorities and preferences, and will
decide whether to try to correct any unsafe techniques."
Other instructors are requiring blind travel students to sign
liability waivers before providing travel instruction. Reportedly,
a blind woman in Texas was told that before she could have O & M
training, she and her husband must sign a waiver of liability
releasing the Texas Commission for the Blind and the O & M
Instructor from any possible suit which might result from an
accident or injury to her, both during training and after its
completion.
In response to the use of these liability waivers, the annual
convention of the National Federation of the Blind adopted
Resolution 90-15 resolving to eliminate such practices. The
Federation asserts that many, if not all, blind persons can learn
to travel safely and independently, when taught by a competent
instructor who believes in the capabilities of blind persons.
In conclusion, I wholeheartedly agree with Dona Sauerburger on many
points. I respect her efforts in encouraging clients to take a more
active role in, and have more responsibility for, their own
orientation. Theirs should be the leading role. I also agree with
her suggestion that O & M instructors and clients should clearly
delineate respective expectations and responsibilities before
initiating services. Such open communication will only promote
understanding and facilitate training.
In my mind, the appropriate role of the mobility instructor goes
far beyond the transfer of orientation and mobility skills. The
finest mobility skills remain unused if one lacks the confidence to
put them to work. For this reason, instructors must develop and
embody a positive philosophy about blindness, a philosophy which
believes in the true equality of the blind traveler to the sighted
traveler�a philosophy which promotes real independence and
self-confidence on the part of blind and visually impaired
orientation and mobility clients.
WHY SHE WALKED OUT ON ME
by Zach Shore
Reprinted from the March, 1991 Braille Monitor.
From the Braille Monitor
Associate Editor Barbara Pierce:
As the president of a state
affiliate, I get lots of telephone calls from people with problems.
Some of them are folks hoping to get rid of a young dog by giving
it to a blind person to act as a dog guide. At the opposite extreme
are those blind people so depressed and damaged by their
perceptions of blindness that there is very little anyone can
initially do to help them. Most, however, are people urgently in
need of someone to listen and understand what they are going
through. I can listen; I hope I can understand; and when I can, I
help.
The following article, which appeared in the fall, 1990, edition of
Insight, the newsletter of the National Federation of the Blind of
South Dakota, reminded me painfully of two calls I received this
past week. The first was from a woman who became blind rather
suddenly last February. She and her husband have two sons about to
enter their teens, so she has many responsibilities in her home and
no current interest in getting a job. Right now she does not
believe that blind people can hold down jobs anywhere, but then she
herself is also prey to the stereotypes. She does not even believe
she can go up or down stairs without the strong probability of
falling. She needs rehabilitation and has established her
eligibility to receive it with the state, but she has been calling
her counselor for months to beg for training. Mostly he does not
return her calls, but this week he told her�or at least so she
says�that she could not have any training because she does not want
to work outside her home. I am now trying to get to the bottom of
that misunderstanding, but in the meantime, I found myself talking
to her about ways of moving about safely and easily in her home.
The other call was similar. This woman was sent to her local
rehabilitation center for training of various kinds last winter.
She was given some cane travel training, but the instructor based
his teaching heavily on use of her remaining sight. She questioned
him about what would happen if she lost that bit of vision, and he
told her to think positively. She woke up one morning seven weeks
ago to discover that she was totally blind. She called the agency
that had given her the original training, but they told her that
her case was closed and there was nothing they could do. In
desperation she called the Federation. One of our members drove to
her home to give her a usable cane and stayed to work with her a
little. She was calling me because she was veering badly and could
not safely cross streets. She is about to be married and does not
want to be a prisoner of blindness in her own house. I found myself
giving her advice about what causes veering and how to correct the
problem.
I wonder what the professionals who so violently disapprove of the
blind helping other blind people with cane travel would have had me
do. Granted, I was not out on the street with either of these
women, but if I had been close enough to them, I would have been.
That would have been far more helpful to them than my telephone
instructions. Of course I can help to see that both of them get the
cane travel lessons they need, but simple humanity demands that I
pass on to them the information I have and they so desperately
need.
Zach Shore is one of our most dedicated and talented younger
leaders. Having graduated last spring from the University of
Pennsylvania, he has now moved to Seattle, Washington, where he is
an active member of our Washington affiliate. Here is what he had
to say at the South Dakota convention last May:
Zach Shore: I have been speaking before large groups since my high
school days. Over the years I have made people laugh, cry, and get
excited. Some I have even put to sleep. But not until I spoke in
Rapid City at the state convention of the NFB of South Dakota had
I ever given a speech which angered anyone to the point of leaving
the room.
What I said in that presentation was so offensive, so morally
reprehensible, and so emotionally disturbing to one woman that she
could not even remain in the room to hear the whole of my remarks.
What did I say to evoke such a response? Did I attack any agencies
or blaspheme against any groups? Not at all. Did I mock or insult
this particular woman? Not at all. Did I use profanity or make
obscene gestures? Certainly not.
What, then, could I have said to prompt such an emotional reaction?
It is very simple. I told the convention how I went with Andre, a
twelve-year-old blind student, to his new middle school and gave
him his first cane lesson. Most people in the audience seemed
pleased to hear about Andre's success. This irate woman, however,
would hear none of it. Why not? This rehabilitation counselor and
mobility instructor felt compelled to walk out because she believes
it is wrong for me to instruct anyone in cane travel when I am not
certified to do so.
This counselor is correct about one thing: my college degree is not
in education, and I am not a certified mobility instructor. To some
degree her distress is understandable. Credentials are generally
important and meaningful. I would not want someone to perform
surgery on a child if that person had not graduated from medical
school and obtained the necessary certification. And, if mobility
instruction really required a master's degree and an official
certificate of approval, I would refuse ever to teach any blind
person cane techniques until I had obtained the necessary
documents. But of course this is not how it is.
I believe that the incensed counselor, and many other professionals
like her, are outraged by something much deeper than our lack of
certification. They believe that blind people are truly unsafe and
therefore are endangering another's life when we teach travel. Many
people, both sighted and blind, espouse this view. When they say
it, they reveal their lack of belief in the blind. If they do not
believe that blind people can travel well enough to teach the
techniques, then how can they believe that the blind can ever be
safe, efficient travelers at all?
When Andre first began exploring his new middle school with a long
cane, he was uncertain and sheepish, but he caught on quickly. He
stopped staring at his feet and started looking forward.
Negotiating stairs no longer seemed like an obstacle course.
Finding classroom doors became easy for the first time. He moved
faster and with self-assured strides. After only 30 minutes Andre
was feeling comfortable and much less frightened. That was when we
met his vision teacher.
This woman explained that she would arrange for all of Andre's
classes to be located on the same floor. She also assured him that
he would get plenty of extra time to get from one class to the
next. As she recited her incantation about how difficult it would
be for him to navigate the school building, all of Andre's newfound
confidence melted away. The more she talked, the more Andre's
demeanor mimicked her defeatist words. I tried to counteract her
spell by saying that Andre might be a bit slower at first; but, if
he were pushed to keep up with his classmates, I was certain he
would do just fine. Unfortunately for Andre I was unable to
convince her.
Blind people are teaching other blind people to travel
independently every day, and they are doing it without
certification. They cannot obtain certification solely because the
Association of Educators and Rehabilitators of the Blind (AER)
refuses to certify any and all blind mobility instructors. But
these blind mobility instructors will go on doing their jobs while
irate professionals wave their degrees and stamp their feet. None
of this is to suggest that all professionals are bad or against us.
That is not true. The blindness system, however, is predominantly
out of touch with the realities of what the blind can do.
This is not an issue of safety or of certification. It is simply a
matter of fact that blind people can both travel and teach travel
safely, whether professionals choose to believe it or not. The
angry counselor does not believe the blind are as capable as she,
and this is why she walked out on me. It is for that very same
reason that we cannot, must not, walk out on Andre.
A CANE IN OUR LIVES.
by Carol Castellano
Last Christmas, when she was five years old, our daughter Serena
received a cane from Santa Claus. To be sure, her father and I were
a lot more excited about it than she was that first day, but it
wasn't long before Serena discovered just what it would mean to
have a cane in her life.
She realized immediately that by holding that long object out in
front of her, she could avoid bumping into things with her nose.
She also found that she could get advance warning of steps, curbs,
changes in the terrain, and the like. She no longer had to rely on
holding someone's hand to avoid potential danger. Suddenly she was
free!
It took her about a week and a half to incorporate the new tool
into her existing repertoire of travel skills�and then there was no
stopping her. The sidewalk was hers. Unfamiliar stairways�no
problem. The way to our neighbors' house was easily learned and
Serena strolled over to deliver a package. At the mall she was free
to explore corridors and enjoy the echoes. Finding elevator doors
was a snap; escalators provided great amusement (for her, not me).
We were able to begin teaching her how to cross our quiet street
alone, a skill appropriate to her age. We began to walk to the park
like other families, holding hands sometimes for the pure pleasure
of it and not because we had to.
One day my husband and I walked over with the children to the local
school to vote. While we were busy signing in, Serena went off
exploring. She followed the strains of an orchestra which was
rehearsing in the school auditorium, a few hallways away. Halfway
down the aisle, heading for the stage, was the new Miss
Independence. What possibilities the cane opened up!
I recall how it used to strike me as a little odd to see in the
Braille Monitor picture after picture of people posing with their
canes. Were they showing pride in being blind, I wondered? Were
they trying to prove a point? Eventually I came to understand that
the white cane is both a symbol of independence for blind people
and a basic tool of making independence a reality. Matter-of-factly
showing the cane in a photograph expresses the fundamental normalcy
of blind people's lives.
In this year's Halloween picture of my children, the Queen of the
Prom stands holding her cane next to brother Superman. It's not a
display; it's not a soapbox issue. To us, a cane in Serena's hand
is just the most natural thing. When our NFB friends gathered for
a picnic in our backyard, Serena at one point was hanging around in
the kitchen comparing canes with the rest of the gang. Just the
most natural thing.
When I look back, I realize that getting the cane was the most
significant event to happen to our family this year. It vastly
changed Serena's level of independence; it changed mine.
At Grandma's house, we can simply direct her to the steps; no
longer do I have to hang onto her along with anything else I might
be carrying; she can proceed independently at her own pace. At the
library I can rush ahead with my pile of books, without worrying
about her tripping on the steps or falling into the fountain. When
we arrive at friends' houses, she can navigate the front walks and
stairways herself. Serena goes from our car in the driveway, along
the walk, up the front steps, and into the house alone; I do not
have to walk her. Since we are in and out of the car so many times
each day, this skill was very important to my freedom.
The cane greatly raised our expectations. It is natural now for
Serena to move along independently. We expect this of her; more
importantly, she expects it of herself. Would Serena have
progressed as much if she hadn't had a cane? I think not. Her
curiosity and urge to explore would have been thwarted; she would
not have been able to move about nearly as freely beyond the four
walls of our home. Her development would have been needlessly
hampered.
It is hard to believe that canes are not given as a matter of
course to young blind children, since the cane is probably the most
important external factor in the development of independence. What
does it say about the attitudes of many professionals towards blind
people and independence if they will not give canes to children?
Could it mean that it is satisfactory, in their eyes, for the blind
always to be followers, always to be led?
It is impossible to understand�and chilling to ponder�why anyone
would argue against normal, natural independence in a child's life.
That is what the cane makes possible. It provides the opportunity
for the blind child to make the normal developmental moves away
from his or her parents, to be just like any other child, expected
and encouraged to venture with increasing independence into the
world.
One day a few weeks ago, Serena's cane got stuck in a crack, and
when she pulled it out it broke. The magnitude of the disaster
suddenly struck her.
"Ooooh," she whined, "now we're going to have to hold hands."
With thanks to Joe Cutter, 0 & M instructor, a creative and
innovative person who teaches parents to teach their children and
who believes in and respects other people, sighted and blind.
SLATE-MATES
A PEN-PAL PROGRAM FOR BLIND YOUTH
Sponsored by:
Parents of Blind Children Division,
National Federation of the Blind
New Mexico Commission for the
Blind
Do you have a blind son or daughter who loves to read Braille and
is always disappointed because he or she never gets Braille letters? Do you
have a blind student who needs encouragement and motivation to improve his or
her Braille skills? Do you have a Braille reader who would really like to have
a friend to talk to about the sort of things that only another blind person
could understand?
If you do, then SLATE-MATES may be just what your child or student
needs. SLATE-MATES is a Braille pen-pal matching service for blind school-age
children and youth. The service is co-sponsored by the Parents of Blind
Children Division of the National Federation of the Blind and the New Mexico
Commission for the Blind.
This is what one mother had to say about what the SLATE-MATES
program:
"Just a quick note to update [you about] [my daughter] and her
Slate-Mates. �They have really hit it off with each other. They've exchanged
pictures, talking tapes, and several Brailled letters, and neither finds the
other dull. They both have a lot in common and find it difficult to meet
sighted friends even though they are mainstreamed into high schools. Thank you
ever so much for your part in the SLATE-MATES program. In fact, you'll never
know how much I appreciate this service which gives so much pleasure to my
[daughter]�."
To sign up for the program just fill out and mail in the following
SLATE-MATES Profile. Once the profile is received, it will be matched up with
another youth's profile. (Sometimes there is a delay while we wait for a
profile to come in that fits your request, so we appreciate your patience.)
Once we have a match we send each applicant a copy of his or her new
pen-pal's SLATE-MATES Profile, and the rest is up to the new slate-mates.
SLATE-MATES PROFILE
Please complete the following form and return to:
SLATE-MATES
c/o Fred Schroeder
New Mexico Commission for the
Blind
PERA Building, Room 205
Santa Fe, New Mexico 87503
Name__________________________________________
Address________________________________________
City__________________State_______Zip____________
Age_____ Male [ ] Female [ ] Grade___________
Interests/Hobbies_________________________________
_______________________________________________
________________________________________________
I would like my Slate-Mate to be:__________age (please specify a range) and:
Male [ ] Female [ ]
I would like: [ ] one Slate-Mate [ ]
more than one Slate-Mate (please specify number of Slate-Mates you desire.)
* What is a slate? A slate is an inexpensive portable Braille writing device.
It is a metal or plastic frame, usually about 2"x8" in size, which holds the
paper in place while dots are punched into the paper with a stylus (a small
handheld tool with a metal point).It is the equivalent of a sighted person's
pencil or pen. It is the most effective and portable method for taking notes
in class, and for other spontaneous note-taking needs when out and about in
the world. Blind children should learn slate skills no later than junior
high/middle school.
DIANNE MILLNER
TO ATTEND
NATIONAL LIBRARY CONFERENCE
Comments from Barbara Cheadle, President, Parents of Blind Children
Division, NFB: Leadership ability reveals itself in many ways. If
I were defining it, however, I think I would say it is the ability
to see what needs to be done, then doing it.
At the 1990 annual business meeting of the NFB Parents Division,
parent Dianne Millner of California volunteered to serve as chair
of the Library Committee. As president, I gave Ms. Millner the same
instructions I gave every committee chair: Become an expert on your
subject; share your information with other parents through
individual contact and through writing an article for Future
Reflections; promote a positive philosophy about blindness; and
find ways to improve services and opportunities for blind children
through your committee activities.
This was in July. It didn't take long for Dianne Millner's
leadership abilities to surface. As she gathered information she
discovered that a White House Conference on Library and Information
Services was scheduled July 9-13, 1991. Assuming that this would be
an excellent opportunity to influence the direction of library
services for blind youth, she proceeded to apply to attend the
conference as a delegate. Her application was accepted, and now
parents of blind youth have one more staunch advocate (Mr. Maurer,
President of the National Federation of the Blind is also a
delegate) at this influential national conference.
Dianne Millner is a excellent example of the parents who are taking
on leadership roles in the National Federation of the Blind Parents
of Blind Children Division. She is aggressive; sensitive;
intelligent; committed to the philosophy and goals of the National
Federation of the Blind; and dedicated to achieving equality and
opportunity for her child and for all blind youth.
All these qualities shine through in the following statement and
resume which Ms. Millner sent with her delegate application. Dianne
not only deserves our congratulations and admiration, she needs our
input and support. Ms. Millner has requested that parents who have
ideas, problems, or suggestions for improvements in library
services to blind youth to contact her: Dianne Millner, #32
Sequoyah View Court, Oakland, California 94605; day: (415)
836-3630, evening: (415) 568-1408
STATEMENT OF DIANNE M. MILLNER
IN SUPPORT OF
DELEGATE
APPLICATION FORM
Both my three-year-old (Ashley) and two-year-old (Tori) love books.
One daughter is sighted; the other is totally blind. Each night
before bed I snuggle up to each one individually and read their
favorite books in print and Braille.
It has quickly became apparent to me that there is not as wide a
variety of books for Ashley as there is for Tori. Additionally,
because we are an African-American family, it is more difficult for
me to find ethnically diverse or African-American oriented
children's literature in Braille.
In part because of this concern, I recently was appointed by the
president of the Parents of Blind Children Division (POBC) of the
National Federation of the Blind (the largest consumer organization
of blind individuals in the United States) to serve as chair of the
Library Services Committee of the POBC. One of my functions is to
compile information on resources of Braille books for blind
children and to suggest ways to increase such resources.
I take my task seriously. Library services for the blind are likely
the most important link to society for blind children and adults.
Without such services, my daughter will not be able to compete
successfully in school, college, or social settings.
I feel that I should be selected to attend the White House
Conference because of my appointment as chair of the POBC Library
Services Committee, because I am the concerned mother of a blind
preschooler, and because I am an African-American who wishes to
encourage the production of a wide variety of Braille books
including ethnically diverse books.
In going over my POBC notes, I ran across an excerpt from a speech
given by Frank Kurt Cylke, Director of the National Library Service
for the Blind and Physically Handicapped of the Library of
Congress, which he gave at the NFB National Convention in 1985. Mr.
Cylke stated:
"Thanks in great part to the concern of Barbara Cheadle [President
of the POBC] and to National Federation of the Blind members
interested in children, we are placing an added emphasis on work
with children...It may be stated that we must place a great effort
on refining our program for children...." (Emphasis added).
Much remains to be done. I wish to be part of that effort.
Dianne M. Millner
Ms. Millner graduated Phi Beta Kappa from the University
of California at Berkeley and is a graduate of Stanford Law School.
During law school, Ms. Millner served as a legal extern to
California Supreme Court Justice Matthew Tobriner.
After graduation from law school, Ms. Millner practiced
law with Pillsbury, Madison & Sutro. There her practice emphasized
real estate, business, and bankruptcy law. Ms. Millner also has
served as a legal writing and research instructor at Hastings
College of the Law.
In 1978, Ms. Millner received a summer fellowship from
the National Endowment of the Humanities to study at Harvard Law
School. Ms. Millner is listed in Who's Who In American Law, Who's
Who Among Black Americans, and The World's Who's Who of Women. She
is past chair of the Corporate and Business Liaison Committee of
the William Hastie Lawyers Association of San Francisco.
Ms. Millner is a member of the American Bar Association
Real Property Section, the California Community Redevelopment
Agencies Association, the Urban Land Institute, the Real Property
and Business Law Sections of the State Bar of California and the
National Bar Association Commercial Law Section.
Ms. Millner's primary areas of practice are real estate,
redevelopment agency law, real estate hazardous waste matters,
bankruptcy and creditors' rights, and general corporate and
commercial law.
A MEDITATION ON MOORE'S MOUNTAIN
by Ramona Walhof
Editor's Note: Ramona Walhof is President of the National
Federation of the Blind of Idaho and a member of the Board of
Directors of the National Federation of the Blind. The following
article appeared in the Spring/Summer, 1989, Gem State Milestones,
the publication of the National Federation of the Blind of Idaho,
and was later reprinted in the Braille Monitor.
For the past several days I have been in Spokane interviewing for
a new office manager for our Community Outreach office. Yesterday
I talked with an absolutely delightful gentleman, who began by
stuttering and stammering about blindness. I did my best to put him
at ease. One thing he told me was that he had seen an area for the
blind in a city park. It had special Braille signs. Gently I
suggested that it is hard for blind people to find the Braille
signs which are scattered in parks. He assured me that there was a
rope to follow from sign to sign. I did not (since I was
considering the man for a job) philosophize with him about how that
had affected his attitude, but I wonder how many sighted people
visit that park and learn just a little more to limit their
expectations of blind people. And I wonder how few blind people
visit that park and enjoy the Braille trail. The rope, of course,
is not a solution. It exaggerates the problem�and it is right there
in Spokane today.
That experience reminded me that I had promised Mary Ellen
Halverson that I would write about Moore's Mountain and the trail
for the blind established by the Department of Forestry (a
different kind of trail), so here it is.
One of my first experiences with nature trails for the blind
occurred in 1966 in London. I was spending a summer in Europe as
part of my studies for a degree in foreign languages, and while I
was in England, a friend invited me to go to a famous British park
to see a Braille trail. She was proud of it, and I went with her
partly out of politeness. I appreciated the interest someone had
in the blind in constructing such a trail, but I found what my
friend had to say much more interesting and complete than the
limited information on the Braille signs. In the United States I
have found the same thing to be true. Where there are special
trails or areas for the blind in museums, blind persons are often
not encouraged to visit the rest of the grounds or facility.
Sometimes we are forbidden. Directors and curators feel pride in
special adaptations for the blind and often call attention to them
for the wrong reasons and in very demeaning ways, implying (even if
it is seldom said) that blind persons cannot appreciate museums and
nature without adaptations, which reflect negatively on public
attitudes and job opportunities for blind people.
Although ropes and Braille signs may not be the best way to help
blind persons enjoy nature and museums, often we may wish to use
different methods of �looking� from those employed by sighted
visitors. I well remember visiting a place called Living History
Farms near Des Moines, Iowa, where I took my children when they
were quite small. There were live animals and old machinery to
show how farming was done in 1920, 1880, and 1840. I took advantage
of the opportunity to look (with my hands) at steers, which were
being used and cared for as oxen. They were huge and interesting.
I also enjoyed looking at old machinery, hands-on. My kids enjoyed
different things (such as pumping water from the well), and they
also had a good time. The whole place was accessible and enjoyable
to me as well as to thousands of others.
When I was working at NFB headquarters in Baltimore, I was
contacted about such matters. One call came from Judy Taylor (now
Judy Jones of Twin Falls, Idaho). She was then working in Florida
for a museum, and she had been requested as a blind staff member to
help make a certain area enjoyable for the blind. I think she said
they were considering a Braille trail. She had some misgivings but
wanted to do what was good for the blind and the museum. If my
memory is accurate, she came up with some adaptations which were
useful to the blind without changing the character of the area and
took the occasion to insure that blind people would be encouraged
to visit the entire museum and grounds. We understand that some
items in museums are (because of age or other conditions) fragile
and should not be handled, but many do not need this protection.
Recorded commentaries in art galleries are often as interesting and
informative for the blind as for the sighted. Some tour guides give
excellent descriptions, which are appreciated by blind visitors.
Accessibility for the blind may consist of a variety of different
approaches, most of which are not exclusively for the blind.
A year or more ago Jan Gawith of the Western Chapter of the
National Federation of the Blind of Idaho was contacted by staff
members of the Forestry Department, which had some money to make a
trail on Moore's Mountain accessible to the blind. Fortunately they
asked us what to do. Jan and other members of the NFB came up with
some suggestions. A tape would be made to carry on the trail,
along with a portable tape player, which would be available to
borrow at the beginning of the trail. Instead of a rope or hand
rail, there would be a rough wood border six or eight inches high
along the right-hand edge of the trail, which could be followed
with a white cane. The wood would look good since it would be taken
from the area and fit into the terrain. This is truly a mountain
trail, 5,000 or 6,000 feet high, north of Boise above the Bogus
Basin ski area. The trail was nearly finished last fall, and
several members of the Western Chapter of the NFB of Idaho went up
and walked along it one Saturday in October. I regret to say that
I was out of town that day and did not get to go, but I am looking
forward to an opportunity to do it. Our members are quite happy
with the way it turned out, and so is the Forestry Department.
On April 14, 1989, there was a meeting at Boise State University to
discuss �making the forest accessible to the handicapped.� Our
member, Dana Ard, who attended the meeting, was pleased with the
tone of the discussion. The goal of the group is to make it
possible for the handicapped, including those in wheelchairs, to go
into the forest to camp and relax with friends and family. That
would require leveling, widening, and paving some walkways.
Currently most campgrounds could not accommodate a person in a
wheelchair.
At the April 14 meeting there seemed to be a good understanding
that all handicapped people do not require the same adaptations as
those needed by individuals in wheelchairs. Dana felt good about
the meeting. A few days later there was a news report on KBOI
radio, and obviously the reporter (who had not been at the meeting)
did not understand. Her news story indicated that the blind
probably could not go into the forest without these proposed
accommodations. It is safe to assume that more people heard the
news story than attended the meeting, so we have some work to do
with the reporter and KBOI.
It is fair to say that some adaptations are useful to the blind. I
think of computers, for example. If a person needs to get
information out of a computer once a week and a sighted secretary
is using the computer frequently, it doesn't make sense to install
speech or Braille output. Having the secretary provide the data
would be better. On the other hand, when a blind person is using
the computer regularly and often, speech or Braille output is the
sensible way to go. Perhaps the situation is not exactly the same
with nature trails�but I wonder.
A few years ago I went backpacking and camping with my teen-agers
and one of their friends in an area near Red Fish Lake. We had
planned to take a six-mile hike up the mountain to a small lake,
camp overnight, and come back down the next day. I was not prepared
for what I found. I was carrying a forty-pound backpack; was
wearing tennis shoes instead of hiking boots; and was somewhat
overweight, inexperienced, and physically out of shape�and in
addition, the trail was six or eight inches wide. On the left was
a drop-off toward a large creek or river. On the right was a steep
mountain going up. The trail was rough, crooked, rocky, and
beautiful. We were 7,000 feet above sea level. The air was thin,
and the sun was hot. I was with three sighted teen-agers, and
blindness was not an asset. We traveled about two miles along that
trail, and for me it was slow and painstaking. I appreciated the
assistance of my daughter, who went at my pace just in front of me
while the other two covered far more territory on ahead. After two
miles of mixed enjoyment and toil, I decided to turn back, to the
disappointment of three kids�and, incidentally, me. That decision
was not made simply because of blindness, but blindness was one
factor in my ability to negotiate that trail. Along with my
inexperience, blindness helped to slow me down. We camped at the
bottom of the trail instead of the top.
I expect to find the trail on Moore's Mountain more pleasant. It is
wider, and the guiding border along the edge will make it easier to
follow. It is truly a mountain trail�with all of the rocks, plants,
animals, insects, dramatic views, and general atmosphere which
cannot be found anywhere else.
However, I certainly would not want to be barred from doing
backpacking with my kids at Red Fish. Blind persons must insist on
their right to be included in all areas, not just certain ones that
have special modifications.
Like the sighted, the blind must have the right to make decisions,
attempt difficult feats�and, yes, take risks. We must insist on the
freedom to reach for more than we can grasp, try when we may not
succeed, and learn for ourselves �with no more interference than
the sighted experience. That is the very essence of learning,
growing, and indeed a full life. How many sighted mountain climbers
would ever have reached the peaks if they had been judged by the
standards which society has traditionally imposed on the blind? I
wonder how many of those who have been reading this article have
already said (either to themselves or others), �Well, naturally she
couldn't successfully compete on the trail at Red Fish. No blind
person could do it. Moreover, this torpedoes her whole NFB
philosophy of independence and competitiveness.�
Those who have had such thoughts should read again and think again.
They have not understood. Let them read on. There are blind people
in Idaho who go backpacking regularly and are far more skilled at
it than I. There is no question that experience and equipment make
anyone far more successful, so I say that there is room for a
variety of approaches.
Speaking of experience, consider the conditioning and opportunities
which have traditionally been available to the average blind
child�or, for that matter, the average blind adult. My son Chris
(sighted) first went backpacking with the Boy Scouts. He has
become good at it and has the necessary equipment and confidence.
At a young age he learned to enjoy and respect the wilderness and
be quite self-sufficient. My daughter Laura (also sighted) went
backpacking with a junior high church group for a week and also
learned to enjoy the wilderness.
I wonder how many blind children have had these kinds of
opportunities, or are having them today, or will have them
tomorrow. In our state the Lions and the school for the blind
sponsor an annual winter camp for blind teen-agers. Blind kids from
throughout the entire state go there and, I gather, have a good
time. And they accomplish at least two things: First, they get to
know each other. Most have no contact with other blind people in
their communities. Second, they get some good outdoor experience,
which may be rare for some of them. But I wonder how many of those
teen-agers would (even by those who applaud their going to the
special camp) be encouraged to go camping in the wilderness with
scouts or church groups.
To a large degree, wilderness opportunities for blind children and
adults will depend on what you and I as members of the National
Federation of the Blind do. Working with the forestry department on
Moore's Mountain is part of it, and educating news commentators is
another. Meeting with other groups of handicapped people who wish
to make the forest accessible is still another. Being vigilant
about attitudes and living active positive lives will do even more.
That is what the NFB is all about. We talk to civic and school
groups, sell cookbooks, work on legislation, try to educate the
airlines, and build better training and employment opportunities
for the blind. And we work to see that opportunities are available
for the blind in parks, museums, and the wilderness. It is all part
of what we are and what we do.
More and more people are coming to Idaho to go camping and
backpacking. Wilderness backpacking trails are challenging and
scenic, and Idaho provides many unique and interesting experiences.
I myself have climbed down rocky and steep slopes to wade in Indian
bathtubs, hiked a very easy trail through the Birds of Prey
Reserve, walked and crawled in and out of caves at the Craters of
the Moon, and climbed the sand dunes at Bruno. There are other
places I have visited or still wish to see in Idaho, and I am sure
that many other blind people in this state have done likewise. I am
equally sure that many blind people have been cautioned,
discouraged, and prevented.
So while our chapter discussed the trail at Moore's Mountain, I
reflected and meditated. When I can find the time, I am going
hiking at Moore's Mountain�and I may have another try at the trail
at Red Fish Lake.
Postscript: The following item about Moore's Mountain appeared in
the Fall, 1990, issue of the Gem State Milestones.
MOUNTAIN TOP EXPERIENCE
by Mary Ellen Halverson
On Saturday, July 14, Western Chapter members and friends headed
for Moore's Mountain. As you may recall, the Forest Service has
worked with the Western Chapter in establishing trails around
Moore's Mountain. We were very pleased the Forest Service came to
us for input regarding any special needs we as blind people might
have for hiking along the trail. In general, we know that blind
people can go hiking and camping anywhere they like with no
problem. However, the Moore's Mountain trail has a couple of minor
accommodations that make for a pleasant and leisurely stroll around
the mountain top. A five- or six-inch high "kick board" has been
set along the right hand side of the trail so that our canes can
easily find it. It is unobtrusive and natural looking. The Forest
Service will also be producing a tape which will describe sites of
interest along the way. The texture of the kick board will change
as one approaches one of these sites.
Best of all, the trail is natural, complete with stinging nettle,
horsemint, big granite rocks within one's reach, and fields. If you
prefer a more rugged hike, Idaho has many beautiful forests and
wilderness areas to offer!
STUDENT DIVISION
NATIONAL FEDERATION OF THE BLIND
The Student Division of the National Federation of the Blind is an
organization dedicated to considering and acting upon issues of
concern to blind students. With affiliates in over 20 states around
the country, and a Board of Directors with members in widespread
geographic locations from Connecticut to California, the Student
Division provides an excellent nationwide network for blind
students.
The Student Division incorporates two basic areas of endeavor. It
is both a self-support network for blind students and a mechanism
for political action. Serving as the collective voice of organized
blind students in America, the Student Division meets on a
continuing basis with such major service providers as Recording for
the Blind and the Educational Testing Service. Our affiliates,
called Student Chapters, also work on both levels (personal network
support and collective action) to promote better opportunities for
blind students in their areas.
We are devoted to changing what it means to be a blind student in
America. There are great opportunities both to give and receive
through involvement in the National Federation of the Blind Student
Division. For information, contact:
Michael Baillif
NFB Student Division President
31548
Larga Vista Road
Valley Center, California 92082
(619)
749-0103.
A ROLE MODEL FOR THE BLIND:
World Champion Blind Water
Skier
Helps Find Jobs For The Blind
Editor's Note: This article was written by Darrell Fry
and published in the St. Petersburg Times. It was later reprinted
in a publication of the National Federation of the Blind of
Florida.
"The hardest part is just believing it can be done and that you'll
be safe out there," Ted Henter Jr. said. "There's always that fear
of smacking into something."
Henter, a St. Petersburg resident, is a world�champion water skier.
Henter's also blind.
The 38-year old man, who grew up in the Panama Canal Zone, has been
water skiing since he was 7 years old. He lost his sight in a 1978
automobile accident in England, but saw no reason to give up water
skiing just because he was blind.
"My family and friends knew it would be no big deal, but when I
told other people they were quite surprised," said Henter, who was
also a motorcycle racer before the accident. "It never occurred to
them that blind people could ski."
Indeed they can. Henter is the United States National Blind Slalom
champion and the U.S. Blind Trick Skiing champion. And two weeks
ago at the inaugural World Water Skiing Trophy for the Disabled in
Wraysbury, England, Henter took the gold medal in the slalom and
the bronze in the trick competition. The event on Heron Lake near
London drew more than 40 disabled skiers from 10 countries.
"They had an event for (ski) jumping and only one person made a
successful landing," said Henter, who also snow skis, roller skates
and surfs. "I've never done that and I didn't want to try it then."
The slalom course for blind skiers is different from one used for
sighted skiers. Instead of following a course outlined by buoys,
the blind skiers zig-zag back and forth across the wake of the
boat. The skier who crosses the wake the most times within a
specified time is the winner.
But the trick skiing event isn't much different from regular
competition. Henter's best moves are 180- and 360-degree mid-air
turns and a trick called "side-sliding" in which he turns his skis
perpendicular to the rear of the boat.
Henter gets help from his father and wife in the boat. One person
drives while the other gives signals to Henter by blowing a
whistle. For instance two short blasts from the whistle tell the
start. One short blast means he's in position and signifies the
start of his run. Two more short blasts means the run is over and
one long blast as the boat heads for shore tells him to let go of
the tow rope.
Through his example, Henter has been trying to show other blind
people that there's nothing they can't do.
In 1985, Henter who has a degree in mechnaical engineering from the
University of Florida, started his own business in St. Petersburg
called EnTech Co. It's a consulting firm for companies interested
in hiring blind people for various jobs.
Business is good, Henter said. When he's not on skis, he's flying
around the country training blind people for various jobs. One of
his biggest clients is Federal Express.
"I also design software and hardware that makes computers talk, so
blind people can use them," he said.
"I want to help change the way society looks at blind people. Once
people realize a blind person can water ski, then they'll realize
blind people can be employed, and they can be successful.
BEING BLIND
(My true story)
by Sindy Greenwell, Grade 5
Lothian Elementary
School
Ann Arundel County [Maryland]
Reprinted from the Baltimore Sun newpaper, Monday, March
25, 1991.
I was born blind. I could read large print until I was 5.
Now I'm 10 and totally blind. I go to a public school. Being blind
requires a 10-pound brailler and a cane about one meter long. The
more I grow, the bigger the cane. My friends are very helpful, and
I can trust them. I can climb on the bars at recess. I can do
anything I want if I try. You see, being blind doesn't mean a
thing. Just because I may mess up on something doesn't mean it's
the end of the world. I could always try again. And I don't need
much help on things, either. Now you know what it's like being
blind.
THE BLIND MEN AND THE ELEPHANT:
EDUCATING THE PUBLIC
by Ronda J. Del Boccio
Reprinted from the Minnesota Bulletin, Summer/Fall 1990;
the newsletter of the National Federation of the Blind of
Minnesota.
The story about the seven blind men and the elephant keeps coming
back to haunt us. Recently I attended a presentation at a local
church in which the speaker used it. After he finished, I talked
with him about the negative portrayal of blindness in that tired
old metaphor.
"What the story means is that a person who cannot see cannot know
truth," I explained. "The story incorrectly equates eyesight with
insight."
I spoke in a straightforward yet undefensive manner. After all, I
was interested in persuading the gentleman to my point of view, not
in creating an enemy for life. I helped him understand the harmful
effect such a story can have by using my own experience. I
explained that as a blind person I am not likely to mistake the leg
of an elephant for a tree trunk.
"I know what the story is trying to point out, but perhaps there is
a way to say the same thing without making any group of people seem
unobservant or ignorant," I said.
Often, people do not think about the way characters are portrayed
in stories. When we make them aware of discrimination they are
usually willing to listen and to change the stories they use,
provided we educate them in the spirit of good will.
The speaker thanked me for making him aware of the negative image
of blind people. He had not realized that the story reinforces
stereotypes about blindness. As I talked with him, a more positive
allegory came to me. I share it here as an alternative to the
elephant story. It does not present any person or class of persons
negatively. Here is the story I told to the speaker.
On a bright spring morning, several people walked along a path
through the woods. They came to a tall oak tree whose thick trunk
and sturdy branches revealed its great age. They stopped to admire
the tree, each in a unique way. Before continuing their journey,
they shared their experience of the tree.
"What a beautiful tree!" one of the group exclaimed.
"I love the shade it provides," said a young man. "It must make a
nice resting place on a hot summer day."
"Did you hear all those birds?" asked an older woman "This tree is
big enough to provide a home for dozens of birds and animals."
"I hadn't thought of that," said a younger woman "But I was
thinking about how long the tree has been here. It must have been
a sapling before the Europeans colonized the country."
"You must be right. I noticed how thick and strong the bark is,"
someone else added.
"Some woodpeckers have burrowed into the tree," an older man
commented.
"It would be fun to climb to the top and look at the rest of the
woods," a child squealed.
"I'm sure it would," said one of the men "I enjoy the smell of the
leaves and the damp earth."
"The roots must dig deeply into the ground. I wonder what they look
like," a teenage boy mused.
"This is truly a beautiful tree," one of the company observed.
And all agreed.
JUDE'S KIDS
by Jude Lincicome
From the Editor: When Jude Lincicome came to her first National
Federation of the Blind function with her three preschoolers in
tow, everyone who met her agreed on one thing: she had a great
bunch of kids! Sarah was so bright and personable, Danny so cute
and polite, and you could just hear the wheels turning in Jeremy's
head as he took everything in. They were curious, alert, and just
sparkled with the joy of living. The paraphernalia which marked
these kids as physically disabled (motorized wheelchairs, leg
braces, etc.) quickly receded to mere background significance
within a few moments after meeting these personable children.
The woman who can take credit for these lovely children is Jude
Lincicome. Jude is the single adoptive/foster parent of seven
children, all multiply handicapped and medically fragile. She
currently has three children at home, including three-year-old
Jeremy, who is blind. (By the time this article is published, she
will have added one more child to her family.) Jeremy, like her
other children, doesn't have just one disability (the blindness).
He was a "preemie" whose multiple problems began when he was three
days old. He had an intestinal perforation and immediate surgery
was required in which about one third of the intestine was removed.
He had an ileostomy for many months. Later, he developed a lung
disease (broncho-pulmonary dysplasia and reactive airway
disease�which, Jude says, is something like having continuous
asthma) and suffered intra-ventricular bleeding on both sides of
the brain. As a consequence of the bleeding, he has mild cerebral
palsy which has weakened the left side of his body. In addition to
the retinopathy of prematurity (the major cause of his blindness),
he has glaucoma in his left eye.
Of his development, Jude says, "For a child that was supposed to be
a vegetable all his life [because of the intra-ventricular
bleeding] he's turned out to be pretty much on age level." Eating
was a problem at first because of difficulties caused by the
broncho-pulmonary dysplasia/reactive airway disease/cerebral palsy
combination of conditions. However, Jude and Jeremy persisted, and
today he can scoop with a spoon, feed himself, and handle a cup
independently. Jude also expects Jeremy to master both cane travel
and Braille. He is working on learning his shapes, loves to "read"
along with his finger with mom as she reads to him, knows where to
find the page number in a book (though he can't read it yet), and
best of all, enjoys books and looks forward to learning to read. He
will soon have a cane. So far, Jeremy is very mobile in his
environment�walking to and from the bus on his own�and loves to
run, Jude says. She is afraid, however, that if he does not get a
cane soon that he will lose this momentum. The professionals have
resisted, but Jude is persistent and is confident that he will have
cane instruction soon.
Busy as she is with her own children, Jude finds time to advocate
for other parents who call on her for information and advice and
also to help find adoptive homes for disabled children who need a
family. Because of her pediatric nursing background and her
practical experience in mothering disabled, medically fragile
children, she is also often called for consultation by hospital
social workers, doctors, and nurses.
The following article is based on a speech Jude gave at a parents
seminar sponsored by the Maryland Parents of Blind Children
Division of the National Federation of the Blind. In it, Jude
shares her very personal feelings and philosophy about raising
multiply disabled, medically fragile children. She is plainspoken
with strong opinions, and is not afraid to raise issues that others
consider taboo. Here is "Jude's Kids."
Jude: Hi everybody, I'm real glad to be here. I think the first
thing I want to share with you is that all of my children are
adopted. I'm working on getting my seventh child, and she will be
with us in probably about a month and a half. All of them have been
multiply handicapped. The little boy sitting next to me is my most
handicapped child right now. When I found him he was totally unable
to do anything. He had never been expected to do anything and
therefore he did nothing. He was thirteen months old. He could not
hold his head up; he did not swallow; he did not reach for toys; he
did not roll over. His eyes turned toward the bridge of his nose.
His left arm and both legs were paralyzed, and he had no social
smile. So I guess that's pretty much the picture of a child who is
a slug. And literally, he was very slimy. He had yucky coming out
of everywhere on his body. I guess because of that no one had even
gotten him up in a rocking chair and rocked him.
Well, what you see now before you is a little boy who can count
from one to ten (although his mouth doesn't work too well). He's
extremely polite. Last weekend we had to take him to the hospital
because he was in shunt failure. When the paramedics left�he was
lying there almost unable to breathe�He said to them, "Thank you."
He's a real special little fellow.
I think what I wanted to share with you most were a few little
ideas about being a parent. I think I can qualify although I've
never had any biological children. But then, I've had more children
than most. I think that being a parent of a handicapped child is
being an expert when all the professionals around you think that
you're a mother. You know your child. You know exactly what your
child can do and cannot do. And believe me, it's a whole lot more
than what anybody else will want you to believe. I was told that
this child here would never sit up�never sit up! [He is sitting
next to her as she speaks.] I have another little girl out there
who is in a motorized chair, but she can walk. I was told she would
never sit up either, that she would be retarded. She's very bright.
She is going to be mainstreamed as soon as she is old enough to go
to school. She's been walking since she was about fifteen months
old. I had to make her first braces because no one would let me
have any. "She'll never walk," they said.
In the school system I am the expert at the ARD meeting for other
children. Other parents call me and say "Come with me; I need some
help." The professionals look at me and they say, "Wow, we really
are lucky to have this lady here because we can really get some
good stuff done for this child." But yet, I can go from one ARD
meeting for someone else's child where I am the expert, into an ARD
meeting for my own child (and the only thing that's changed is that
I have eaten lunch) and I am stupid. I am a mother. I know not what
I am talking about. My expectations for my child are totally
unrealistic.
Being the parent of a special needs child has an awful lot of
implications that you would never think of such as: (and when I get
finished I suspect that you guys will think that I've been peeking
in your house) You get out of the shower before you're done and the
soap's still on because your kid cried and you have to know what's
going on. Or, you have to stop going to the bathroom�real quick,
right? You have to miss a lot of work because your kid is sick and
nobody else knows how to take care of him or her. You and your
husband have planned for a long time to go somewhere, and all of a
sudden you can't go because your kid doesn't look exactly right or
your baby-sitter says "I'm sorry, but I have something else I need
to do". And everybody else is going, but you're sitting at home.
The friend that you had all your life, the one you shared all your
intimate secrets with and who had so much in common with you, all
of a sudden you're strangers. You do an awful lot of
soul-searching, an awful lot of self-examination. You feel like
you're banging your head against a blank wall. You're trying to
figure out what is going on: "I don't understand this. Why am I so
different? Why did all this happen to me?" You almost feel that
you're growing another part to your body, and it's shaped like a
kid, and it's attached, and you can't get it off. It goes with you
when you wash the dishes. It goes with you into the bathroom. It
goes with you to work. Even though it's not with you, it's there.
Right? It invades your thinking, your planning, your work, your
play, your body functions. You now have something added to your
body, to your whole being.
Is it any wonder then that your spouse has no idea what you look
like anymore? Does it stop you from talking to one another, because
even he or she doesn't understand? That's a real big problem,
people. We need to keep talking to one another. Talk about
important things. Talk about how you don't like this, how you're
not having very much fun at this party. Because believe me, your
spouse isn't having very much fun at this party, either. Here's a
biggy. You never thought you'd cry so much in your life. You have
so many tears. Where do they all come from? They can't possibly
come from me. I never cried like this before in my life! But you
know the tears that you cry are not just tears of pain. Those tears
will also become tears of joy. I have never in my life experienced
the joys that I now know because of my children. Believe me, I know
what the pain is because I had a doctor let one of my children die
because he wouldn't recognize me as an expert. So I know the pain.
But being a parent of a special needs child and a multiply
handicapped child is, I think, kind of like the metamorphosis of a
butterfly. When you first discover that you are the parent of a
special needs child, you feel like a caterpillar. You don't like to
touch yourself. You don't like the way you look. You're sure you
look yucky to everybody else. You feel like that caterpillar. But
the thing is that you're eating up everything. You're learning
everything. You're taking everything in. You're watching
everything. You're probably reading everything you can find, right?
You are slowly but surely making that caterpillar large, full, and
soon it's going to go into that chrysalis. Something is going to
click in your head and you'll say "This wasn't so bad after all."
And you look at your child. You've been really, really working
hard, and all of a sudden your child starts to blossom and meet
your expectations. He or she starts to meet his own expectations.
The people around you are doing a pretty good job. Do you know
what's happening to you? You've come out of that cocoon and you're
a full-blown butterfly. And believe me, I think you're a whole lot
better person because you've gone through this with your child
(this thing attached to your body, right?). Somehow you now know
joy better than anybody else.
The eastern people in their religions have something called the yin
yang. Has anybody heard of that? By golly, it is real. Because
your pain is so intense, your ability to feel joy is multiplied
ten-fold. That is the yin yang. Without that pain you would never
be able to feel that joy, that euphoria over your kid's reaching
for a toy for the first time. He didn't know it was there, but he
had faith that it was there. He was right! Does that bring tears
to your eyes? Do you remember that? I remember that. It's a very
scary world, but it's also a very, very happy world. The joys that
you feel are sparked by the very tiniest of things. Once, one of my
sons was having difficulty in passing his urine. When he finally
had a big diaper full of urine, I was ecstatic! If anybody had ever
told me twenty years ago that I would be ecstatic over �, well,
it's not something you can tell most of your friends.
I have a friend who has a child that was born with no brain. She
has a brain stem, so that means the heart beats. She breathes.
Somehow she can suck a little bit, but even that's going. She is
blind, she is deaf. She doesn't have the front part of the brain
which would allow her to feel any kind of pleasure. So she is a
child that just lies there. That mother said the most outrageously
wonderful thing to me. She said to me, "Jude, you will never, never
know how blessed I am with this baby. She has taught me the real
true meaning of love, of giving, of learning, of accepting, of
cooperation, of communication." When you come to think of it guys,
why are we here on this earth? Isn't that all it? Isn't that it?
She learned that from her child with no brain. How many of us have
ever felt like maybe somebody kind of did a dirty trick to us? But
this lady feel genuinely and thoroughly blessed with her child who
will never even smile at her; never reach for her; never give her
anything but herself, for whatever that is.
We've been talking about pain and we've been talking about joy, but
there's one other emotion that's very much present when you parent
a special needs child. And it's not one that you need to keep
around. You need to keep around joy for obvious reasons. You need
to keep around pain, too, because without the pain you can't know
the joy. But guilt is a very, very destructive emotion. It serves
absolutely no purpose. But for some reason, we as human beings
think we need to tuck it in our pocket, keep it, and treasure it.
We think, "I must have done something for this to have happened. My
husband had to have done something to make this happen. It's in my
genes. God must be punishing me." Did you ever think any of those
things? In the soul searching and the self-examination that I
talked about before, you somehow don't come up with, "Wow, were you
ever a neat lady!" or "Wow, you are some super man." You come up
with, "I must have done something wrong." These feelings can be so
damaging, especially in the way they affect your child. Because if
you are guilty of something, then you have to somehow make it all
right, right? You end up making it all right by saying "Oh, isn't
he cute? Don't make him do that, he's crying. He doesn't want to do
that today. Oh, go get it for him. Look at him. He's trying so
hard." That, ladies and gentlemen, will be the one thing that will
kill your child's chances. He's going to think that this world owes
him something, but this world does not owe any of us anything. It
will never give us anything that we don't take for ourselves.
So, take the guilt that you have. Look at it. Examine it. Do
whatever it is that you need to understand it, and then throw it in
the trash because that's where it belongs. To begin with, it
doesn't make any difference whose fault it was or whether it was
anybody's fault. Here you are. It is you and your child. The only
way your children are going to perform those miracles that I know
you can make them give is for you to accept yourself and accept
your child for whatever and whoever you both are. I've performed
three miracles so far, and I'm about ready for a fourth one because
she's coming to live with us soon.
THE COMMITTEE
ON THE BLIND
MULTIPLY HANDICAPPED
CHILD
WHAT IS IT and WHAT DOES IT DO?
by Colleen Roth
Note from Barbara Cheadle, President of the Parents of Blind
Children Division of the National Federation of the Blind: Ever
since I appointed Colleen Roth and Ruth Van Ettinger as co-chairs
of the Committee on the Blind Multiply Handicapped Child, the role
of this important group has been mushrooming. Here is Colleen
Roth's brief report on the committee and its efforts:
The focus of the Committee on the Blind Multiply Handicapped Child
is children and adults with blindness and some other disability,
which can be physical or mental. Individuals in this group range
from those with above average intelligence and a physical
disability to those with profound mental retardation in addition to
blindness.
We share information with families and professionals who work with
this special population. In general we find that blindness is not
the primary disability when mental retardation or other
developmental disabilities are involved.
We circulate a periodic update, which is sent to all the families
and professionals who have requested information, and we continue
to prepare new materials that these families and educators need. We
currently have 250 families and professionals on our mailing list.
We also network families and professionals with others coping with
similar situations. We get the information we need to match people
up by sending out questionnaires. Families who have requested
information are sent a questionnaire which helps to determine the
child or adult's functional level, age, the medical diagnosis, and
the areas in which the child or adult needs assistance. The
responding individual can also indicate whether the family or
care-giver wishes to network. A questionnaire is also sent to
professionals asking them about the settings in which they work and
the population they serve. We also ask whether or not they wish to
network with other professionals. All information received is
confidential. Only the name, address, and a brief description of
common characteristics is sent to those we match up for networking.
The rest (contacting each other and how much and what kind of
information is shared) is left up to the network pair. So far, we
have matched up 52 families and 72 professionals.
We also circulate a Braille Monitor article entitled "Education of
the Blind Mentally Retarded Child," a toy resource list (toys are
selected on the basis of a child's mental age), and two articles on
feeding.We have had several requests for information on dealing
with self injury. We now have order forms for a pamphlet on this
topic published by the Institute for Disabilities Studies,
University of Minnesota. If you are interested in receiving this
booklet, please write to us for the order form, and we will be glad
to send one to you.
Mrs. Ruth Van Ettinger serves as co-chair of the POBC Committee on
the Blind Multiply Handicapped Child. Her area of expertise and
interest is higher functioning blind and otherwise disabled
children. She will be corresponding with those who have an interest
in these youngsters. She will also contribute material to the
update and other mailings
If you wish to receive the update or any of the articles listed
here or if you are interested in our committee network, please
write to Mrs. Colleen Roth, Co-chair, POBC Committee on the Blind
Multiply Handicapped Child, 1912 Tracy Road, Northwood, Ohio 43619,
or call (419) 666-6212.
Requests for all items, including information about higher
functioning blind children, should be sent to Colleen Roth at the
Northwood address. If you have any ideas, suggestions, or comments
for the update, please submit them in writing.
If you copy or pass on our materials to others, please be sure that
the name and address of our committee is included so that those who
get it know how to contact us directly for more help and
information.
Please spread the word about this committee and network! Your
support and involvement is vital to our committee's growth and
effectiveness.
PARENTING OUR BLIND CHILDREN
by Shirley Baillif
Reprinted from The Blind Citizen, Fall 1990; a
publication of the National Federation of the Blind of California.
The following speech was presented by Shirley Baillif during a
panel presentation by parents of blind children on Saturday
afternoon at the 1990 NFB of California Convention. Mrs. Baillif is
the mother of Michael Baillif, who is the past president of the
California Association of Blind Students and is the current
president of the Student Division of the National Federation of the
Blind. Michael is also a second-year student at Yale University
School of Law.
Years ago there was a popular song that said in part:
"You've got to accentuate the positive. Eliminate the negative.
Latch on to the affirmative, and don't mess with Mr. In-between."
If I were asked to give one piece of advice regarding our topic
this afternoon, "Parenting Our Blind Children", that little ditty
would express my philosophy.
When our son became totally blind at age 13, one month before
entering high school, we felt we were in an abyss�lost in a
situation about which we knew little or nothing. When Michael, who
was an active young teenager, more interested in sports than
academics, turned to me and said, "Mom, what will I do now?" the
Good Lord gave me the good sense not to see a dismal picture of a
young boy growing old, helplessly striving to eke out a living.
Instead I answered him honestly by saying in effect, "Michael, I
have never known a blind person well enough to know how the blind
accomplish the tasks they do, but I have encountered a few blind
people indirectly and I know they have not only graduated from high
school, but have gone on to graduate from college, become
professionals in various fields, or have had their own businesses.
Honey, if they can do it, you can do it�you just have to learn
how." And that is exactly what we set out to do.
As soon as Michael was released from the hospital, I called our
local high school district, told them the situation, and received
an answer of absolute dismay. This was a new situation to them. The
few blind students they had had in the past came to the high school
district through the elementary district where they had learned
basic skills. They would have to get back to me. Michael was
fortunate enough to then be contacted by two positive-thinking
special ed teachers�one for instructing him in handling his
classroom studies and one for mobility.
All through his high school years, Nancy, his classroom special ed
instructor, kept reminding me of the fact I should protest if his
IEP's (Individual Education Plans) weren't what I thought they
should be. How could I protest something I knew little or nothing
about? Michael was progressing in his skills and doing more than
quite well academically. In retrospect, however, I can see where
Michael missed out on some phases of his special education. His
teacher insisted he learn Braille, which he did, reluctantly. He
felt Braille to be old-fashioned, outdated by tape recorders and
talking books. You see, he was never introduced to the slate and
stylus, so he saw no practical use for Braille. How this opinion
has changed and how we have learned!
Also, Michael never ate in the cafeteria during his high school
days, so this phase of mobility was never touched upon. He missed
more than one meal during his first year of college. This happened
whenever he missed contacting a friend who would help him with his
tray and, so Michael would not trip someone with his cane, his
friend would guide him through the crowd to find an empty table. I
learned about the technique used to independently accomplish this
feat through a video shown at an NFB Convention involving
elementary school children! They made it look so simple.
Our family was introduced to the NFB when Michael was searching for
college scholarships. Michael is not a "joiner" just for the sake
of being part of a group. He has to be interested in it for one
reason or another. He made one exception though. After receiving a
scholarship from the NFB of California, he felt he was obligated to
give back $5.00 of it and become a member of the Student Division.
It turned out to be the best investment he has made or ever will
make.
There is no way I can even begin to express how much the NFB has
meant to our family or how much Michael has been influenced by the
role models of the NFB leaders, both on a state and national level.
And, I cannot tell you how much his peers within the Federation
have become, not only special friends of Michael's, but like a
close-knit family to his father and me as we watch their lives
unfold as they strive for and accomplish their individual goals,
overcoming the stumbling blocks that have been thrown in their
paths.
I have learned so much since those days spent with Michael at
UCLA's Jules Stein Eye Institute, and now I want to share this
knowledge with other parents as they come face to face with the
destiny of their blind offspring. This is why I am so excited about
starting a support group for parents of blind children in our area.
I have a young mother of a newly blinded child, whom I met through
a mutual friend, to thank for showing me there is this need; and I
have the NFB to thank for giving me the encouragement and positive
attitude to meet this need.
Mary Willows asked me to read the flyer I have made up to be passed
out through the school system to the parents of blind children. It
reads: "A Support Group for Parents of Blind Children is being
formed in North County. First meeting" (then the day, date, time,
and place will be given). "You are invited to come as we share our
concerns, experiences, problems, and victories. Our goal is to see
that our children will lead full, independent, and productive
lives. For further details, please contact:" (then I listed my name
and telephone number and the name and number of one other person.)
The day before I left to come to the Convention, I received a phone
call verifying permission to use the fellowship hall of our church
as the meeting place for this group. When I get home, I will call
the young mother in Oceanside who will be a contact person in that
area, and we will set the date for our first meeting. Whether there
are four or forty in attendance, we will, in true Federation
spirit, relate to them that:
"You've got to accentuate the positive. Eliminate the negative.
Latch on to the affirmative.And don't mess with Mr. In-between."
THE BRAILLE 'N SPEAK:
BENEFITS FOR THE
BUSY PROFESSIONAL AND A
HELPFUL TOOL
FOR LEARNING BRAILLE
by Betsy Zaborowski, Psy.D.
The following article was originally published in the
Spring 1990 issue of the Newsletter of the Human Services Division,
National Federation of the Blind. The author is the president of
this division.
It is now possible for me to comfortably write this
article after putting in a ten-hour day at the office. Just a few
months ago, if such a task needed doing and I was tired, I would
have to put it off till my eyes had rested. Now I lay my tired body
down, shut off the lights, and play with this wonderful computer,
the Braille 'n Speak.
I began to learn Braille about 5 years ago. I, like so
many blind persons who have some usable vision, was never taught
Braille. And also, like others, I began to lose additional vision
in my 30s. Quickly (to my surprise) I learned the basics of Braille
as I began my internship in clinical psychology. Keeping an
appointment book and taking notes with a slate and stylus was slow
but possible, and I was determined to complete my doctorate on
time. But when it came to writing in a proficient manner that
enabled me to edit my work, the Braille I had learned in a few
months was not enough. I got through my doctoral paper using
dictation and readers to edit. Writing became a task I avoided. Now
that I am in private practice and teaching at Johns Hopkins,
writing has become an even more essential skill.
Learning Braille is not a difficult task, but practicing
the skill in a disciplined manner has always been a struggle for
me. I recognized I made progress reading and writing in Braille
whenever I applied myself, but a busy schedule and some usable
vision served as excuses. Increasingly, however, I found myself
frustrated with the inefficiency of struggling to read and edit by
enlarging, so it became clear an alternative was needed. After
observing others talk about and work with voice access computers I
knew this was the route for me. But like so many others of my
generation I had my share of computer phobias. Terms such as hard
drive, bytes, K of memory, and talk of numerous software options
would induce a slow panic. I would think to myself, "You are a
global thinker, one who is comfortable with abstract thoughts, not
paying attention to details or the exactness and precision that
computers (so I thought) demand." Now don't get me wrong; I usually
view new learning as a challenge and see myself mastering things
quickly, but this computer stuff was feeling so contrary to my
nature!
Well, as a good psychologist should know, in vivo
practice is the best treatment for phobias. So I thrust myself
into the computer age and the `90s by buying a Braille `n' Speak.
When talking to Dean Blazie, the inventor and distributor of the
Braille `n' Speak, I confided in him that learning all the commands
seemed much worse to me than studying for the psychology licensing
exam. He used humor to reassure me and promised support and
availability in time of crisis. My husband did wonder if a
specially adapted padded case could be developed to insure the
safety of the machine (and himself) when I throw it across the room
in a fit of impatience.
To everyone's surprise my progress with this tool was
swift and without incident. The immediate feedback features, help
file, and flexibility to use a combination of grade 1 and grade 2
Braille, facilitated for me the rapid access to the many uses of
this little portable computer. I call myself a grade 1 1/2 Braille
user and improving. As one writes one can have the machine echo
back what has been written; thus errors such as reversals of
Braille signs can be easily detected and corrected. It is amazing
how fast I have been able to automatically write in Braille.
The Braille `n Speak is also small and portable, making
it easy to take to the various meetings I attend, as well as to
work with it at home and at the office. I use this tool to write
items that in the past often were left undone. It is actually fun
and headache-free to write now. Recently I was asked to write a
book review, an article for a psychology association newsletter,
and numerous memos and communications related to committee work.
The Braille `n Speak has made it substantially more convenient and
efficient to complete these tasks. I write everything from
telephone numbers to long articles. On the job, intakes and
evaluation reports are done in a timely manner. I use a print
printer at home, and I am now feeling brave enough to think about
a Braille printer and a larger computer with all those disc drives
and other stuff. I don't imagine I will ever be a computer jockey,
but it does feel good to be over this phobia.
Please contact Dean Blazie (Blazie Engineering, 3660
Green Mill Road, Street, Maryland 21154; (301) 879-4944) or the
National Braille and Technology Center [see photo and address on
this page] if you are interested in learning more. Communication is
the name of our professional game, so these types of tools are
essential if we are to keep up. Good luck with your phobias�I hope
you have as good a resolution as I have had.
BRAILLE BILL PASSES
The following information comes from Tom Balek, Secretary
of the Parents of Blind Children Division of the NFB. He is also
active in the Kansas affiliate of the National Federation of the
Blind.
On April 2 Kansas governor Joan Finney signed into law
House Bill #2208, commonly known as the Braille Literacy Law. The
bill, sponsored by Representative Dick Edlund, will require school
districts to make instruction in Braille available to any visually
impaired student who desires it.
The bill had passed both the House and the Senate
unanimously. In addition to Representative Edlund, who is blind and
former president of the Kansas affiliate of the National Federation
of the Blind, a number of proponents testified before the education
subcommittees of both bodies. They included Larry Waymire, vice
president of the Capitol Chapter of the NFB in Topeka; Susie
Stanzell, president of the state affiliate of the NFB; Ralph
Bartlett, superintendent of the state School for the Visually
Impaired, and Jeff Balek, a blind third-grade student from Berryton
Elementary School.
Studies indicate that literacy among the visually
impaired has deteriorated in recent years. Educators often use tape
recordings, text magnification equipment, and text-to-speech
computer and scanning devices as the primary methods for delivering
information and curricular material to students. Each of these
alternatives to print has its own merits and drawbacks.
Magnification equipment allows low-vision students to read print,
but it is expensive, cumbersome, and a slow and sometimes painful
process. And there is concern that students who learn only by
listening never obtain the basic skills of literacy, namely,
effective reading and writing.
The Braille Literacy Bill insures that no student who
needs and wants instruction can be denied it. The National
Federation of the Blind has promoted the legislation across the
country, and many other states have already passed or are
considering similar bills.
LEGISLATIVE AGENDA
In February, 1991, nearly 300 blind Federationists from
around the country converged on Washington, D.C., for the annual
Washington Seminar. The purpose of the annual seminar is for blind
people to meet with congressmen/women and discuss the legislative
needs of the blind for the coming year. The following four
priorities were identified at this year's seminar:
1. Congress should amend the Rehabilitation Act of 1973
to establish the client's right of choice in selecting agencies to
provide rehabilitation services. (This issue is very timely to
parents because of the new amendments to the education law which
provide for transition services for disabled youth.) Unlike
Medicare patients who can choose their own doctors, or college
students who can use federal aid to go to the college of their
choice, blind and disabled rehabilitation clients are required to
utilize designated state agencies. This should be changed.
2. Congress should insure that politics in the form of
accreditation does not threaten programs serving the blind. The
nearly financially bankrupt National Accreditation Council for
Agencies Serving the Blind and Visually Handicapped (NAC) is making
a last ditch effort to stay afloat by asking Congress to tie
federal funding to accreditation. Considering that NAC has a
25-year history and track record of poor performance and hostile
relations with consumers, Congress should reject this politically
motivated maneuver.
3. Congress should safeguard business opportunities for
blind vendors on Federal highways. In 1982 the "Kennelly
Amendment," gave blind businessmen and women the priority to
operate vending machines at highway safety and rest areas. This
important source of income for blind men and women is being
threatened by proposals to commercialize the services at these
sites. Congress should take action to protect employment
opportunities for the blind from being overrun by big commercial
interests.
4. Congress should amend Section 8(a) of the Small
Business Act to include individuals with disabilities as a defined
minority group for purposes of eligibility in the Minority Small
Business and Capital Ownership Development Program. The social and
economic disadvantage which accompany disabilities are well-known
and should be beyond dispute. The Americans with Disabilities Act
(PL 101-336) now provides the legal mandate needed for SBA to take
this necessary action.
BY-LINE CORRECTION
It is common practice for editors to omit by-lines on
articles they have written for their own publications. I do so
myself. Sometimes I will give my article a by-line, sometimes not.
This issue contains examples of both practices.In the last issue of
Future Reflections (Vol. 10, No. 1) I reprinted the article
"PreBraille Readiness" from the VIP Newsletter. I printed it
without a by-line, for that was how it was originally published.
Since then, I have been informed that Donna Heiner is the author
of the article and, therefore, should receive credit as such. Donna
Heiner, as you may guess, was the editor of the Vip Newsletter at
that time. She is no longer involved in work with blind children
but, nevertheless, likes to stay informed by reading such
publications as Future Reflections; which is how this correction
came to be.
SETH GOES TO TORONTO
Eight-year-old Seth Leblond, the blind son of Robert and
Connie Leblond, leaders in the New England Parents and Educators of
Blind Children Division of the NFB, was selected as one of the
winners of the "Yes I Can" award sponsored by the Foundation for
Exceptional Children for the 1989-90 school year. Seth and his
family traveled to Toronto, where he received his trophy. All the
winners were interviewed before the official ceremony began. When
Seth was asked what this award meant to him, Seth said that it
meant that he had worked hard and well. When asked what he wanted
to do when he grows up, he replied without hesitation, "I'm keeping
my options open."
BOOK ON TAPES
The following information is from Working Mother.
Over and over again. That's the way kids like to view
their favorite videos or listen to tunes on audiocassettes. But
which tapes are really worth these repeat performances? For more
than a hundred suggestions, refer to A Parent's Guide to Video and
Audio Cassettes for Children, by Andrea E. Cascardi (Warner Books).
This handy book will save you the time of searching for
quality tapes for children. Video recommendations include The
Foolish Frog and Other Stories, which features a toe-tapping
animated version of a folk song sung by Pete Seeger, and the
reassuring Mister Rogers: Dinosaurs and Monsters. Audiocassette
choices range from the hilarious stories in Lyle, Lyle Crocodile
and Other Adventures of Lyle to Tom Glazer: Music for One's and
Two's.
Cascardi's guide is divided by age groups, from newborn
to 12. Look for it in bookstores, or order a copy by sending $8.95
to: Warner Books, 666 Fifth Avenue, New York, NY 10103.
CREATE-A-BOOK
Dianne Millner of California came across this information
and passed it on to be shared with other parents.
Here is a special gift your child or grandchild can
treasure for the rest of his or her life. Create-A-Book is
personalized throughout with your child's name and other important
information about your child. Among the different titles to choose
from are: The Big Parade, Baby's Create-A-Book, My Birthday
Surprise, and My Beach Adventure. All books can be made in Braille,
and six titles are available in large print. Books are
professionally printed and illustrated and come in a protective
hard cover. For more information and an order form, write to:
Create-A-Book Today, P.O. Box 81707, Las Vegas, NV 89180. Telephone
number: (702) 871-5004.
DISABLED DAUGHTERS
The October, 1990, Number 14 issue of the NICHCY News
Digest focuses on the theme: "Having a Daughter With a Disability:
Is It Different For Girls?" Although the issue focuses on how
parents can promote independence for disabled daughters, the advice
is also excellent for the parents of disabled sons. Single copies
of the issue are available free of charge upon request. Write to:
National Information Center for Children and Youth with Handicaps
(NICHCY), P.O. Box 1492, Washington, D.C. 20013; or call
1-800-999-5599 (toll-free except in D.C.); (703) 893-6061 (in the
D.C. area); (703) 893-8614 (TDD).
FOR TEENAGE YOUTH
TFB Publications has a number of Braille and large print
pamphlets which discuss facts and information about sexuality,
menstruation, pregnancy, breastfeeding, and so forth. Many of the
pamphlets are written for teenagers, especially teen girls. The
prices range from less than a dollar to $5.00 or so. TFB also does
Braille transcription, large print reproduction, and cassette tape
duplication. To request a catalog, write to: TFB Publications, 238
75th Street, North Bergen, NJ 07047; telephone: (201) 662-0956.
ELECTRONIC TEXT
We've been asked to carry the following information.
Recording for the Blind (RFB) is initiating an electronic
text or E-TEXT program. Electronic, or computerized, text is
material encoded as digital data on a computer diskette. A blind or
print-handicapped person can access the material with a personal
computer, to which a speech synthesizer, Braille display, or
character-enlarging equipment is attached. In addition to
distributing computer diskettes, RFB plans to distribute audio
cassettes on which the electronic text has been "read" by a speech
synthesizer. RFB is beginning its E-TEXT program by making its own
publications available on computer floppy disks, upon request. It
will officially begin production of educational materials in E-TEXT
with the establishment of its first electronic studio, scheduled to
open in 1992 at RFB's headquarters in Princeton. Currently,
individuals or organizations may receive RFB News or A Guide to
Using Recording for the Blind's Services on either a 3 1/2" or 5
1/4" IBM diskette by calling or writing: Recording for the Blind,
Office of Public Affairs, 20 Roszel Road, Princeton, NJ 08540;
(609) 452-0606.
JUVENILE GLAUCOMA/CATARACTS
The following question and answer is reprinted from the
VIPS Newsletter, Louisville, Kentucky. The author is Craig Douglas,
M.D., pediatric opthamologist.
Q. Are conditions such as trauma and juvenile cataracts
associated with juvenile glaucoma?
A. Yes. A very small percentage of individuals who
receive a direct blow to the eye may have damage to the drain of
the eye and subsequently develop increased pressure in the eye.
This may present either at or shortly after the time of trauma or
may actually present anywhere from months to years following such
an injury. If one has a significant injury to the eye, then
periodic examinations to rule out glaucoma later on are warranted.
Also children who have had cataract extraction are unfortunately at
an increased risk to have glaucoma, with anywhere from 5-10% of
these children subsequently developing increased pressure.
Hopefully, new cataract extraction techniques will lower this
incidence, but even with new techniques we are finding that
pressures may later become elevated. This may happen anywhere from
5 to 20 years following cataract extraction and is more common in
children that have had cataract extraction at a very early age as
opposed to the teenage years.
RELATED SERVICES AND O & M
The following information is a reprint of part of a
letter that was published in Kid-Bits, a newsletter of the Kentucky
School for the Blind:
[A] June 27, 1990, letter from John Brock, Superintendent
of Public Instruction, Kentucky Department of Education, was
addressed to local school superintendents and special education
coordinators. The letter contained the following item plus
information about a task force being formed to study qualification
for O & M instructors in Kentucky.
�In response to local district request for clarification,
the Office of Education for Exceptional Children recognizes
orientation and mobility training for blind or visually impaired
students as a related service which may be considered by the
Admission and Release Committee as required to assist a blind or
visually impaired student to benefit from special education. EHA-B
funding may be utilized to pay for the provision of such services��
A LESSON FROM THE GEESE
Reprinted from Network, the newsletter of New Jersey
Self-Help Clearinghouse.
Have you ever wondered why migrating geese fly in V
formation? As with most animal behavior, there is a good reason
from which we can learn a valuable principle of mutual aid.
As each bird flaps its wings, it creates an "uplift"
for the bird following. By flying in their V group formation, the
whole flock adds 71% more flying range than if each bird flew
alone.
Whenever a goose falls out of the group formation, it
suddenly feels the drag and resistance of trying to fly alone, and
quickly gets back into formation to take advantage of the "lifting
power" of the bird immediately in front.
When the lead goose gets tired, it rotates back into
formation and another goose flies at the point position.
The geese in formation honk from behind to encourage
those up front to keep up their speed.
When a goose gets sick, wounded, or shot down, two
geese drop out of formation and follow him down to help and protect
him. They stay with him until he is either able to fly again or
dies. Then they launch out on their own, with another group, or to
catch up with the flock.