Future Reflections, Spring '92
Future Reflections, Spring '92
FUTURE REFLECTIONS
Vol. 11, No. 2
Spring, 1992
Barbara Cheadle, Editor
Contents
Children and the NFB Convention in Charlotte
The Turning Point
Confessions of a Scholarship Winner by Jennifer Lehman
Parent Educates Fairyland About Blindness by Dianne Millner
No Good for the Blind in "Good and Evil" by Barbara Pierce
Shanthi's First American Year by Barbara Freeman
The First Rocky Mountain Regional Parents of Blind Children
Conference by Julie Hunter
Tours With Allure in Charlotte by Wayne E. Shevlin
KIDS KORNER
* Blind Student Bucks State Ruling
* Christina
* Walt Cone: Communications Assistant
* Is There A Dog Guide in Your Future?
Comments on CCTV's and Braille by Mary Ellen Gabias
Spatial Relations and the "Little Room" by Lili Nielsen, Ph.D.
with
introductory material by Donna Tatro
Fast Facts on Individualized Education Programs by Christopher
Button
J.O.B.
Braille Readers Deserve More by Cynthia Aronoff
Literature Review: Itinerant Teaching: Tricks of the Trade for
Teachers of Blind and Visually Impaired Students
Written by Jean E. Olmstead. Reviewed by Doris Willoughby
Education of Blind Children: Spotlight on Idaho by Ramona Walhof
Coming to Grips With Blindness: A Mother Talks to Medical
Professionals by Loretta White
NFB NET by David Andrews
HEAR YE! HEAR YE!
CHILDREN AND THE NFB CONVENTION IN CHARLOTTE
Charlotte is a great place for an NFB Convention, and a
great
place for kids, too! First of all, children will be
delighted--and
parents relieved--to discover many nearby, inexpensive
restaurants
and fast-food places. Visitors to Charlotte will also appreciate
the friendly people and the mild weather (temperatures from
June-August range from 87 to 67 degrees). Each of the four
convention hotels have swimming pools, so be sure to bring swim
suits!
Next, there is wonderful family entertainment and
recreation.
Of course, the major focus is the convention and learning about
blindness, but there will still be free time before and after the
convention and on convention tour afternoon, Thursday, July 2.
The
Convention Center is conveniently located within walking distance
of a large city park; some of the city's most interesting
historical sites and museums; a brand-new, state-of the art
Aquatic
Center (which is accessible to the orthopedically handicapped);
and
the city's most popular hands-on Science and Technology museum-
-Discovery Place.
For those who wish to go further afield, there is the
Afro-American Cultural Center (this is a long walk or short ride
from the Convention Center); the Nature Center (inexpensive and a
moderate drive from the Convention Center); the Mint Museum of
Art
(a 5 minute drive from uptown Charlotte); Celebration Station (a
family fun center with bumper cars, miniature golf, game rooms,
and
so forth--located on the Outer Loop of Charlotte); the Reed Gold
Mine (located in the nearby city of Stanfield); the Charlotte
Motor
Speedway (located between Charlotte and Concord off highway 29);
and Carowinds (a family theme park with water rides, roller
coasters, and so forth--located off I-77 south of Charlotte); and
many more attractions.
But wait! Before you start making your plans, first check
out
the "Tours With Allure" on page -- of this issue. The North
Carolina affiliate of the NFB has put together some great tour
packages for Sunday, June 28; Monday, June 29; Tuesday, June 30;
and Thursday afternoon, July 2. The pre-arranged tours are not
only
convenient and inexpensive, they give you the chance to meet lots
of other parents, blind kids, and blind adults in a relaxed,
informal setting.
Special arrangements have also been made by the Parents of
Blind Children Division for a Children's Fun Day field trip and
other activities on Sunday, June 28. (This is the date of the
big,
day-long seminar for parents of blind children.) While parents
are
attending the parents seminar children ages 5-12 can be learning
and having fun, too.
Under the capable leadership of Lori Anderson, a former
kindergarten teacher, and with the help of dedicated Federation
volunteers, the children will begin the day with get-acquainted
activities, games, and discussions/demonstrations of
blindness-related skills and techniques. The children will then
go
to a nearby restaurant for lunch. (To promote independence, each
child will be given money and assisted as needed in ordering
their
own lunch.) After lunch, the group will walk to the Discovery
Place
museum for an afternoon of exciting hands-on experiences at one
of
the top science museums in the country. The highly popular
Discovery Place features: a Science Circus where children learn
about light, power, motion, and sound; a domed, 6-track sound
system Omnimax theater; the Space Voyager Planetarium; an
Aquarium;
a Collection Gallery; and a 3-story replica of a tropical jungle-
-the Knight Rain Forest. The group will return in time for the
children to reunite with parents following adjournment of the
parent seminar at 5:00 p.m. The cost of the "Children's Fun Day"
is
$10 per child; this includes lunch and admission to Discovery
Place. In order to get group rates we must make reservations in
advance for Discovery Place, so please pre-register (see form
below) your child(ren) for Children's Fun Day. Send the
pre-registration information plus the $10 fee per child to:
Children's Fun Day, Lori Anderson,111 Marquette Avenue, South,
Apt.
302, Minneapolis, Minnesota 55401.
Child care, sponsored by the NFB Parental Concerns
Committee,
will also be available for babies and children up to age 12
during
the Convention, including all day Sunday, June 28.
Preregistration
is not required for child care, however advance notice from
parents
planning to use child care would be much appreciated. To help
defray the costs of child care, the Parental Concerns Committee
is
asking that parents make a donation of: $50 for the week (this
includes banquet night) for the first child and $25 for each
additional child; or $10 per child per day, and $10 per child for
banquet night if the full week is not needed. (Parents who
cannot,
financially, make the suggested donation are requested to contact
Carol Coulter to discuss alternative donations or arrangements).
Please contact:
Carol Coulter, 2504 Glenn Drive, Columbia, Missouri 65202;
314-474-3226.
If you have not yet made your room reservations for the
National Federation of the Blind Annual Convention in Charlotte,
North Carolina, please do it now! Remember that single rooms are
only $30 per night; doubles and twins, $35; triples, $38; and
quads
$40. These prices are in addition to tax. Write to: Convention
'92,
National Federation of the Blind, 1800 Johnson Street, Baltimore,
Maryland 21230; or call Anthony Cobb at 410-659-9314. Room
deposits
of $40 are required and may be paid by check, money order, or
credit card. For further details refer to the December, 1991,
Braille Monitor and the Winter, 1992, Future Reflections. This
should be the best convention ever, so make your plans now!
THE TURNING POINT
Editor's Note: I met Ann and Dale Elliott at the 1991 NFB
convention. It was clear they had come to convention determined
to
learn all they could about blindness. They sought out parents,
teachers, and blind adults of all ages. Everyone who met them
must
have been impressed, as was I, with their down-to-earth attitude
and desire to learn. They also demonstrated courage. It isn't
easy
for parents to talk about a child's blindness when emotions are
still raw and close to the surface. But with knowledge comes
understanding, and with understanding comes healing. I was once
asked by a parent when would her tears ever stop. I said
something
like this: "You are a parent, the tears never stop. However, the
nature of your tears can change." That turning point comes so
much
more surely if, like the Elliotts, you seek knowledge and
understanding from those who know blindness best--the blind
themselves. Here is Ann and Dale Elliotts story as told in a
local
newspaper, the Times/Record News of Wichita Falls, Texas, on
Sunday, February 2, 1992.
`Big Brown Eyes' Child's Blindness Helps Parents See
By Lois Luecke (Senior Staff Writer)
Ann and Dale Elliott still become teary-eyed when they talk
about their adopted son, Caleb.Their tears are joyful, where once
they were the tears of parents facing an unknown. Not until he
was
5 months old did the Elliotts, older parents in their 40's,
discover that Caleb was blind.
"We were devastated," said Mrs. Elliott. "He has the
prettiest
big brown eyes. To look at him, you would never know that there's
anything wrong."A number of people, Mrs. Elliott said, asked if
they still wanted to keep Caleb. "Of course, we did," she said.
"He
was ours."
The Elliotts' initial reaction, though, was one of disbelief
and denial. They said they experienced various stages of grief,
including anger and depression. Eye specialists told them that
Caleb was born with a fatty buildup and a "pseudo cherry spot" on
his retina. No name was given to it and no one knows why, said
his
mother.
During that critical time, Mrs. Elliott says in retrospect,
"I
think probably I held my baby closer. My husband and I both cried
and we still do at time....Then for the most part you accept it
and
go on with your life. But I don't think you ever get over the
hurt.
I don't think you feel so much for yourself but for your child.
And
he doesn't need it. He doesn't know. his world is normal."
The Elliotts have come a long way in the three ensuing
years.
They believe they reached a major turning point only last July at
the annual convention of the National Federation of the Blind in
New Orleans.
Members of the NFB parents division, they heard talks by
many
of the nation's blind leaders. They saw sightless teen-agers making
their way effortlessly through the convention halls, having
fun.Role models like these and the Federation itself, they said,
opened up new vistas for them and their son.
"We have no doubt that Caleb will be a totally
self-sufficient
adult. We expect him to grow up and marry and have children. The
only problem he has is that he can't see. But there is nothing to
keep him from being a very successful adult. We intend to see he
gets the best education he can get," said his mother.
Both parents are involved in all of Caleb's activities. They
are learning Braille and encouraging Caleb to learn Braille by
reading such books as a Sesame Street book on the ABC's."His
vision
teacher Brailled sticky paper with every letter on each page.
Another book is called a twin visions book. While you read the
nursery rhymes to him, he feels the Braille. He doesn't know what
it ways, but this is getting his fingers accustomed to the feel
of
Braille."
His parents enrolled Caleb in preschool in September 1990 at
The Learning Center at First Presbyterian Church. There and at
home
he receives visits from his vision teacher, who works at Region
IX
Education Service Center. He will be eligible for mainstreaming
into the public schools when he reaches kindergarten.
The Elliotts are charter members of a new support group for
parents with visually impaired children. They keep up with new
developments, such as the Texas Legislature's passage of a model
Braille bill, specifying that the state will provide all the
textbooks or the capability of the textbooks to be printed in
Braille.
The public school system in Texas starts working with
visually
impaired and deaf children from birth, said Mrs. Elliott. In
Archer
County, the Elliotts come under the umbrella of the Big 4 Coop
for
special education.
"Caleb is a typical 3-year-old. He is typical in every way
except that he can't see. To him that's not a problem," said his
mother, a licensed vocational nurse who works for a physician at
the Wichita Falls Clinic."Being blind from birth, Caleb can go
anywhere in the house," said his father, a system operator with
TU
Electric. "He can tell you about anything in the house." Caleb
still has light perception and that helps him with balance and
mobility.
Sometimes he "trails the wall" with his hand when he goes
down
the hall, said his mother. They have taught him to keep his hands
out so he won't bump into things. He uses a small cane when he
goes
outside and when the family goes to the mall or to a restaurant.
In
the near future, his parents hope to buy a computer for him, with
both Braille and regular printer.
Caleb and his parents enjoy unusual rapport. As they sat
together for photographs in Caleb's room, they chatted and
laughed
and Caleb kept up a running commentary about his "new toy," a
balloon toy that "replaced an `ailing' Kermit." The youngster
runs
over to the toy box in his room and pulls out a toy. As he does
with most objects, he feels for the toy, puts it to his nose to
smell, then to his mouth and then to his ear to check the sound.
Dale and Ann Elliott said they have learned a great deal
from
Caleb and his acute senses of touch, sound, and smell. "When we
turn into our driveway, he says, "We're home. It's a `soft ride,"
because our driveway is smooth," in contrast to some of the rural
road around their house, Mrs. Elliott explained.
"He can't see the mountains or the sky, everything that is
beautiful," said Dale Elliott. "...But we went to Ruidoso on
vacation last October. He just loved the mountains, the babbling
brooks, the smell of the pine cones, the smell of the pine trees,
and feel of it all. He can probably tell you more about the
mountains now than most people who go there."
Elliott's eyes brimmed with tears. "The first year he was
blind, I would pray every night that the Lord would restore his
vision. And now I pray every night, `Thank you, God, for giving
me
such a fine boy.'"
CONFESSIONS OF A SCHOLARSHIP WINNER
by Jennifer Lehman
Reprinted from the December, 1991, Braille Monitor.
From the [Braille Monitor] Associate Editor: Jennifer Lehman
is a sophomore at St. Norbert College, majoring in
communications.
She reminds us all over again just what the impact of the
National
Convention is on people who are experiencing it for the first
time.
If you are toying with the idea of attending the NFB convention
for
the first time or if you know someone who is doing so, read this
article, and consider that this same expansion of the world and
deepening of self-confidence is available to everyone who attends
our conventions and dives into the activities and the
opportunities
available. Here is the story of what happened to one young woman
as
first printed in the Fall, 1991, issue of the Wisconsin
Chronicle,
the publication of the NFB of Wisconsin:
As I stepped from the oppressively humid jetway into the
startling coolness of the New Orleans airport, I felt the
apprehension I had been fighting to control begin to overwhelm
me.
Flying alone for the first time, I had just arrived in an
unfamiliar city to spend a week attending a convention of a group
about which I knew almost nothing. Lurking beneath my
apprehension,
however, was a spark of excitement. I realized that this trip
could
be a challenging and fun adventure. I could not have known then
how
much I would learn and what an exciting and unforgettable
experience the annual convention of the National Federation of the
Blind would be.
Prior to this convention my contact with other blind people
had been limited. I was the first blind student to enter the
Watertown public school system and am presently the only one at
St.
Norbert College. Apart from my younger sister, many of the blind
people I had met seemed to exemplify the stereotypic image of
blindness. They seemed totally dependent upon others to meet all
of
their needs. I was not anxious to spend a week surrounded by such
people. I felt that there were no other blind people like my
sister
and me--people who thought of their blindness, not as a handicap
or
an insurmountable hurdle, but as something which, though
sometimes
a nuisance, did not have to keep them from doing what they wanted
to do with their lives.
Soon after arriving at the convention, I discovered, to my
relief, that I had been wrong. The ideas about blindness which I
had thought were unique to me and my sister were actually part of
the philosophy of the NFB. I was among people whose attitudes and
accomplishments I admired and who reached out and made me feel
that
I was a part of their huge family. The sense of community I felt
was one of the most positive aspects of the convention for me.
Another positive aspect was the chance to learn more about
the
NFB. Before this trip I knew almost nothing about the group. I
had
heard some mixed reports. For instance, I had heard that it was
somewhat radical, especially in its fight for exit row seating on
airplanes. I had also heard that it worked hard to promote the
teaching of Braille, something which I very much support. Through
conversations with members and many excellent speeches, I learned
a great deal about the philosophy and actions of the National
Federation of the Blind. I found that I agree with much of this
philosophy. I plan to become an active member and may even work
to
start a student division in Wisconsin.
The convention taught me as much about myself as it did
about
the NFB. I have always considered myself fairly independent, but
this convention taught me to be even more so as an improved cane
traveler. Walking with so many other people who were also using
canes, I gained new skills as well as more of the confidence I
needed to help me travel better. As I relaxed and opened up to
people, I also gained much-needed self-confidence. I hope that
the
positive effects this convention had on my self-image will last a
lifetime.
Attending the annual convention of the National Federation
of
the Blind is an event I will never forget. I am extremely
grateful
to the members of the scholarship committee and all those who
worked to make this experience possible for me. By winning the
Wisconsin NFB scholarship, I received more than just the money to
help pay for my tuition. I gained confidence, knowledge, friends,
and memories which I will cherish forever.
PARENT EDUCATES FAIRYLAND ABOUT BLINDNESS
by Dianne Millner
Editor's Note: The basic job of a parent of a blind child is
the same as it is for other parents--to prepare that child for
independency and self-sufficiency as an adult. Granted, the task
is
complicated by the fact that most parents never asked for this
job,
and have little notion of how to begin raising a blind child.
Many
parents also lack the benefit of knowledgeable, skilled
professionals who could make the task easier (not infrequently,
the
professionals actually make it harder.) But once parents realize
that the goal is the same--only the means of getting there is
sometimes different--then everything begins to fall into place.
But
the parent who stops here has only completed half the job.
What's the other half? It is this. Like other
minorities--such
as African-Americans, Hispanics--the blind face prejudice and
discrimination. Granted, it does not usually come in the form of
hatred and bigotry. However, pity, ignorance, and condescension
can
keep a blind person from getting job, renting an apartment, or
flying unharrassed on a plane just as surely as hatred and racism
keeps other minorities from full participation in society. Like
parents of other minority groups, parents of blind children must
wrestle with such questions as: How do I build self-esteem and
confidence in my child when those around him/her act in such a
way
to tear it down? How do I prepare my child to recognize and face
prejudice and discrimination as an adult, without crushing
her/his
spirit? and, What can I do to change attitudes so that my child
will have more opportunities for full participation in society
than
do the blind adults of today?
Though her daughter is still only a preschooler, Dianne
Millner of Oakland, California has already come to grips with the
second half of her job. Perhaps it is because she found the
National Federation of the Blind early in her daughter's life.
Perhaps is it is because she is an African-American and is
therefore especially sensitive to this need. Whatever the reason
or
reasons, Dianne takes her task of educating the public about
blindness seriously. Here is a letter she sent last summer to the
director of Children's Fairyland in Oakland, California. As you
read it, consider the impact just one letter, like this one, can
have on people's attitude about blindness and disabilities in
general.
Educating the public about blindness is not somebody else's
job. It is our job. By taking personal responsibility, and
combining our efforts with others through the National Federation
of the Blind Parents Division, it is possible that our children
will enter society as adults on a level of equality never before
known by the blind of the world. Here is Dianne Millner's letter:
July 22, 1991
Herbye White, Director
Oakland Office of Parks and Recreation
R>Oakland, California 94612
Dear Mr. White:
A few months ago I investigated the possibility of having
a birthday party for my daughter at Children's Fairyland.
I was very impressed with the facilities and agreed to
reserve a catered birthday party on Sunday, July 21.
We were pleased to be informed that our birthday party
participants could attend one of your daily puppet shows
and that my daughter would be acknowledged at the
beginning and given a special key to operate some of the
attractions.
On Sunday, July 21, my daughter and her friends eagerly
awaited the puppet show as part of their birthday party
activities. My daughter was very excited to be called to
the stage and given her special key. She then sat down
with her friends and waited with anticipation to watch
the puppet show. I had told her that the puppet show
would be "Pinocchio" and gave her a brief description of
the story.
We were all having a very good time until the point in
the show when two characters came out, one who described
himself as "lame" and another with a big sign across his
chest labeled "BLIND." We were further dismayed to hear
the characters explain that they had become lame and
blind as a sort of punishment or consequence of some act.
Although we are sure that the performers did not intend
to offend anyone, the characters and the messages that
they portrayed nevertheless were very damaging. They said
to the small children at the puppet show that: (1.) being
lame or blind is terrible and horrifying; and (2.) these
maladies are punishments for something that a person did
wrong.
You see, Mr. White, my daughter (who was called to the
stage that morning) is an ordinary preschooler who
happens to be blind. Her blindness is an inconvenience at
times but certainly it is not a terrible malady--
blindness is a normal characteristic that occurs in the
human population as do other disabilities. She was more
like the other preschoolers sitting at the puppet show
than different from them. Moreover, she is not blind
because sh did anything bad and became blind as a
punishment.
The reason we are pointing this out to you is not to
condemn or chastise your performers. We merely hope that
you will modify this part of the performance so that it
does not convey or reinforce to very impressionable
youngsters (and their parents) negative stereotypes about
disabilities or make children with disabilities feel bad
about themselves.
People often reject such criticism on the basis that we
should not change the traditional way of telling stories.
The facts are, however, that some traditional stories are
insensitive and inaccurate and either should not be told
or should be modified, especially when they are being
told to young children. There are alternative
non-demeaning ways to convey the same idea that the
performers would like to convey in the play without using
these characters.
For your information, I am enclosing a short commentary
on the often cited "The Blind Men and the Elephant" story
[from Future Reflections] in which the author was able to
convince a speaker to convey the same story idea but in
a positive and non-insulting manner.
We hope that you will give this matter serious attention
and look forward to hearing back from you.
Very truly yours,
Alexander, Millner & McGee
Dianne M. Millner
NO GOOD FOR THE BLIND IN "GOOD AND EVIL"
by Barbara Pierce
Editor's Note: The following article is an edited and
somewhat modified version of a much more detailed article (same
title) which appeared in the December 1991, Braille Monitor. The
issue in which the article appeared is free of charge, and can be
ordered from: Materials Center, National Federation of the Blind,
1800 Johnson Street, Baltimore, Maryland 21230; (410) 659-9314.
It was a battle about "Good and Evil," and between good and
evil--and the good prevailed. But the battle would not have been
won--and, for that matter, would not ever have commenced--had it
not been for the coordinated, nationwide effort of the National
Federation of the Blind. In the end the victory was complete, and
the show of strength was such that neither friend nor foe will
forget it. In fact, the threatened disaster was converted into a
vehicle for unprecedented opportunity.
On September 25, 1991, people in an estimated 9.3 million
homes sat in their living rooms watching a blind character on an
eagerly-awaited new prime-time situation comedy called "Good and
Evil." The writer was Susan Harris, creator of the hugely
successful programs "Soap," "Golden Girls," and "Empty Nest." The
blind character George was played by Mark Blankfield, and the
portrayal made fun of blind people and our alternative
techniques.
He shared billing on the program with the stars Teri Garr and
Margaret Whitton. George made his entrance the first week halfway
through the show by sweeping laboratory glassware off every
surface
he could reach with his wildly flailing cane. In the following
four
and a half minutes he staggered up a staircase and around the lab
looking for his lady love (mostly in the wrong direction), made a
pass at a hanging coat and struck himself with the coat rack,
groped across the body of another male character until even he
was
irrefutably persuaded of his masculinity, and choked himself on
his cane as he stumbled out the door. In subsequent weekly
appearances George continued to break any glass in his vicinity
and
fall up or down every available set of stairs. In addition he
created a number of embarrassing situations by failing to
recognize
that silent people were present or notice when other characters
left the room.
In short, every tired old saw about the oblivious, socially
inept, clumsy blind person was hauled out and played for all it
was
worth. From the first preview of the "Good and Evil" pilot, which
Federationists saw last summer, we protested in the strongest
terms
to ABC's Entertainment and Broadcast Standards departments. Our
complaints were met with the statement that all the characters on
"Good and Evil" were drawn broadly and intended to be parodies of
real people. In effect we were asked where our sense of humor
was.
In letters to those who complained about George to ABC and in
press
releases and interviews, network officials repeatedly said that,
if
George had been meant to be a true-to-life character, such a
portrayal would have been in poor taste. But no one could
possibly
miss the parody element, so there was no reason to modify the
character or remove him from the script.
That was the position ABC maintained from the beginning, and
one is struck by its shallowness and naivety. Although the
National
Federation of the Blind has succeeded in educating many members
of
the public enough for them to admit that blind people (in theory
at
least) can be capable citizens if given the chance, there is
still
a large residue of unconscious prejudice in most people that
would
cause them to identify a character like George as a more or less
accurate extension of a normal blind person trying to cope
ineffectually with the sighted world. ABC's concept of George as
parody would never even enter the equation. The presence of an
incompetent blind person slashing and smashing his way through
the
program would necessarily give people emotional permission to
abandon their newly-learned and difficult-to-accept notion of the
blind as equal partners. Moreover, the most devastatingly cruel
form of humor at someone else's expense is surely that in which
the
object of the joke is also its unwitting perpetrator. In every
episode George invited laughter at himself by his antics, his
stupidity, and his comments. Absurd as every blind person knows
his
behavior to have been, his actions assumed a semblance of reality
just because they were being performed by the blind character.
There is a degree less cruelty in wisecracks made by other
characters about or to the one being laughed at. Archie Bunker
made
fun of all kinds of people in the program "All in the Family."
Even
those who shared Archie's world view understood that part of the
joke was his lack of tact and taste, and Archie was usually shown
to be wrong in his opinions. The result was that, although
everyone
was invited to laugh at the jokes, no one was being asked to
accept
Archie's point of view.
The greatest fear that blind people and their friends had
was
that because of the public's inability to recognize the absurdity
of George's behavior, the stereotypical clumsiness and
obliviousness to actual events around him which George exhibited
would compound the problems blind people already have in
employment
and social interactions. As more than one indignant correspondent
inquired of ABC executives, "What do you suppose the chances
would
have been for a blind job applicant wanting work in a research
facility the morning after George smashed his way around the lab
in
the first episode of `Good and Evil?' If the employer had seen
the
show, none at all."
Almost equally disturbing to thoughtful blind viewers was
the
response to George of the other characters on the program. No one
ever got mad at him for smashing everything in sight. Genn, the
good sister and the woman with whom George was enamored, never
once
told him to go jump in the lake despite his inappropriate
behavior.
On a show memorable for the rudeness, cruelty, and selfishness of
most of the characters, everyone was the soul of tact and
patience
with George. They were united in nothing but their belief that
George was not a responsible adult, capable of hearing hard
truths.
It is just barely possible that a little of the rough and tumble
of
real life on a sitcom for George might actually have carried a
whiff of humor. But the most demeaning part of this hands-off
behavior was the unstated, but graphically portrayed conviction
that George was absolutely not an acceptable candidate as a
romantic partner. At one point George was wandering around the
lab,
trying to find Genn as he poured out his love to her. She
remained
silent, almost cringing from the very thought of physical contact
with him. Then Eric, the man whom she loved and her sister was
blackmailing into marriage, walked in, and she sheltered in his
arms. The message was clear: Genn would not say an unkind word to
or about George, but, guilty though she felt over it, she wanted
nothing to do with this repellent and pathetic creature.
When "Good and Evil" burst on the fall schedule, the
National
Federation of the Blind mobilized an astonishing range of blind
people and their friends and family members. They immediately
understood the depth of the insult and the seriousness of the
danger to blind people if George were allowed to grope and
stumble
his way through a weekly sitcom. Federationists wrote thousands
of
letters to various ABC and Touchstone Productions executives and
to
the program sponsors. Many people turned to the telephone to
lodge
their protests. In fact, on Monday, September 23, for about a
half
hour we flooded ABC Television's New York switchboard with calls
to
urge the network to withdraw the season premiere of the program.
Participants in the U.S./Canada Conference on Technology,
which took place at the National Center for the Blind September
19
to 21, sent a telegram to ABC registering their disapprobation.
The NFB of Minnesota mobilized itself in time to conduct a
demonstration outside the local ABC affiliate in St. Paul on
Wednesday afternoon, September 25, the day of the show's
premiere.
By October 2 the battle was well and truly joined.
Federationists everywhere had circulated the names and addresses
of
program advertisers to add to their lists of ABC executives, and
the mail was pouring into corporate headquarters around the
nation.
We announced that we would begin picketing the New York offices
of
ABC Television every Wednesday afternoon until "Good and Evil"
vanished from the ABC prime-time line-up. In addition,
Federationists in other cities began taking to the streets to go
on
record personally in opposition to George and all he stood for.
Demonstrations were organized outside ABC affiliates in
Washington,
D.C.; Chicago; Denver; Colorado Springs; and Los Angeles in
addition to the one in New York. One-time-only pickets took place
in other cities as Federationists urged station managers to press
harder on network executives to remove George and his friends
from
the air. Brochures were prepared and picket signs constructed.
Despite the fact that NBC and CBS television network
affiliates consistently refused to cover this story (they
maintained that they didn't want to give free publicity to a
rival,
but the blind remain convinced that out of self-interest they
preferred to protect their colleagues), our protest against "Good
and Evil" and the demonstrations across the country garnered a
good
bit of media attention. Newspapers and the wire services carried
stories every time we circulated a press release. The Fox and CNN
television networks filmed our demonstrations and aired
interviews
with Federation spokesmen. Even "Entertainment Tonight," a
syndicated program produced by ABC Television, covered the story
twice.
To make a long story a little shorter, after a meeting early
in October with ABC officials, weekly protests outside ABC
headquarters in New York, and a continuous outpouring of letters
to
Good and Evil sponsors, on Thursday, October 24, 1991, ABC
announced that it had ordered production of "Good and Evil"
stopped. With eleven episodes already completed, it was not
immediately clear just how many more would actually air. In
unofficial discussions, Federation leaders told ABC executives
that
we understood the time it takes to make arrangements to replace a
canceled program, but we would be mightily displeased if more
than
one more episode were to appear. In the end, only one more, that
of
October 30, was broadcast. With that, the curtain came down on
one
of the sorriest experiments in television humor ever conducted.
Among those who wrote letters and made telephone calls to
protest Good and Evil, were parents and their blind children. One
parent, in a letter to ABC asked if the writers and producers had
ever considered the impact the lab scene could possibly have on a
blind high school student who walked into his/her science class
the
following day? Adam Emerson, a blind student from Michigan, took
the initiative, after he heard about the show from his Mom, Sunny
Emerson, to compose his own letter to ABC and the sponsors of
Good
and Evil. Here is Adam Emerson's letter:
October 18, 1991
Dear _______:
Hello, my name is Adam Emerson; I am currently eleven
years old, and I am planning to be a professional
student, particle physicist, and a chemist.
Your show "Good and Evil" reinforces stereotypes about
blind persons, and makes fun of them. For instance, my
sister has seen that I can live competently, but after
she watched "Good and Evil" her opinions changed. My
mother, Sunny, asked her is she wanted to let my nephew,
Andrew, go on a field trip to Greenfield village
supervised by blind persons, and she refused.
Furthermore, I have met several blind persons who are
currently employed in the occupations listed above. Shows
like "Good and Evil" deliver messages that may affect a
person's opinion of blind people. Please do not show
anything that will hinder the chances of myself and other
blind children's chances of getting a job in the future.
Sincerely,
Adam C. Emerson
The time may come--one hopes that it will--when the American
people are ready and able to laugh together about the funny
things
that happen to blind people. Nothing would be a healthier
indication of our final emergence into first-class status and
full
equality. But that time is not in the foreseeable future. As long
as the general public presumes our incompetence, our clumsiness,
and our inability to understand or appreciate what is going on
around us, blind characters on television who exhibit these
traits
cannot be funny. Until every blind person has an opportunity to
receive effective training and a chance to compete for good jobs,
we will all suffer from caricatures like George.
Yes, it was a battle about "Good and Evil," and between good
and evil--and the good prevailed.
SHANTHI'S FIRST AMERICAN YEAR
by Barbara Freeman
Editor's Note: Mike Freeman, a blind computer analyst, and his
wife Barbara (who is sighted) are long-time leaders in the
Washington state affiliate of the National Federation of the
Blind.
When Mike and Barbara began the adoption process about four years
ago, they were a little nervous. Not only did they have to deal
with the usual bewildering mass of paperwork, interviews, and
unexpected pitfalls associated with the adoption--especially
overseas adoption--process, but they had to deal with questions
and
doubts about Mike's ability to care for a child. Why? For no
other
reason than the fact that Mike is blind. Fortunately, it is no
longer rare or unusual for blind individuals to successfully
adopt
children. The National Federation of the Blind has been providing
help and encouragement to prospective blind adoptive parents for
over twenty years, and has in the process developed some
excellent
literature about the competency of blind parents. Also, the NFB
Parents Division formed a Blindness and Adoption Network a few
years ago to give support and information to blind people trying
to
adopt any child, or to any individual seeking to adopt a blind
child.
As a consequence, blind persons generally have fewer
difficulties today in overcoming negative attitudes and ignorance
about blindness among adoption social workers. So it was with
Mike
and Barbara, and eventually Shanthi joined her family in America.
But a whole new set of challenges awaited Mike and Barbara.
Shanthi, too, is blind, and for nearly a year she had been in a
less than ideal environment. Here is Barbara's story of
"Shanthi's
First American Year."
My husband, Mike, and I met our new daughter, Shanthi Anne,
at
the Seattle-Tacoma International Airport on November 13, 1990.
Shanthi, then aged eleven and a half months,flew to us from
India.
Our social worker had recommended this baby to us because she was
outstandingly responsive and alert when she observed her on a
trip
to India the previous April. Shanthi is anophthalmic, this means
she was born without eyes.
When Shanthi arrived at our home in November, she had
changed
little she had been placed in the foundling home the previous
April. She could not bear weight; she could sit up, but not get
to
a sitting position by herself; and she could roll, but not crawl
or
creep. She examined people's faces, hands, and clothing, but
never
reached out to find anything beyond the person holding her. Most
disturbing of all, Shanthi did not know what a bottle was and
could
not use a cup or eat from a spoon.
Another set of parents had visited her foundling home and
had
observed the babies being fed. Because of a nipple-borne
infection,
the doctor had forbidden bottles. As a result, at every feeding
one
caretaker would hold the babies down and pry open their mouths
while another caretaker would pour thick water-buffalo milk in
from
above. The babies would scream and gag the whole time. The social
worker who brought Shanthi from India had been feeding her with a
little medicine syringe. She would squirt formula into Shanthi's
mouth while Shanthi sucked her thumb. Shanthi expected to be fed
lying down, and never took her thumb out of her mouth. She got
more
formula on her than in her.
We drove home with our baby without any idea about how we
going to feed her. Upon the advice of our pediatrician, we
decided
to train Shanthi to a cup instead of back to a bottle. Our doctor
also advised us to start feeding her a wide variety of foods
immediately. Shanthi was underweight and had mild anemia. There
was
no time to introduce solid foods gradually. Shanthi's front
teeth
were coming in when she arrived so it was doubly important that
she
learn to bite and chew right away. A child who does not learn to
use her teeth when they are coming in often has eating problems.
A
delay in learning how to eat plus the early trauma of forced
feeding might very well have caused a life-long problem.
Thus began an extremely intense three weeks. My goals were
twofold: first, to teach her how to eat a mixed diet and second,
to
give her control over her food intake as soon as possible. I
bought
training cups with lids that allowed the formula to flow when the
cup was tipped. I wanted Shanthi to know that tipping the cup
caused the milk to flow. Some training cups are so spill-proof
that
the milk must be sucked out.
I insisted from the first that Shanthi sit up to eat or
drink.
I sat her in my lap with my left arm behind her back so she could
not lie down. By the third feeding, she was sitting in the
highchair. When I gave her a drink, she learned she could control
intake by pushing my hand away. I also got her to eat a little
strained food but I had to chase her mouth as she moved her head
back and forth. She also kept her thumb in her mouth most of the
time and I had to catch her when it came out. I learned to keep
the
spoon in one place and let her come to it. Within ten days
Shanthi
could eat graham crackers and even a fig newton cookie. Upon the
advice of an eating therapist, I stopped using baby-food the same
day she learned how to eat the graham crackers.
I taught her how to pick up the cup by placing her hands on
it
and showing her what to do. After she learned how to pick it up,
it
took several more days to learn how to tip up the cup to get the
formula. I placed crackers or large sticks of food in her hand
and
moved her hand from the tray to her mouth. Soon she could feed
herself finger-food. As Shanthi practiced feeding herself, she
slowly learned how to get smaller bits of food into her mouth. As
soon as Shanthi discovered that she could feed herself, she
refused
to take anything from a spoon She began to use a spoon again only
when I showed her how to use it herself.
Shanthi attended the NFB National Convention in New Orleans
in
the summer where she became much more aware of how adults drink
out
of open cups because she sat in our laps a lot while we talked
with
friends. She heard the tinkling ice in water, juice, and tea and
started reaching for them. I would help her taste them. When we
got
home, I taught her how to drink from an open cup. I moved her
hands
from behind. Because she was having trouble moving the full cup to
her mouth, I fed her a few times in just her diaper without a bib
so she could feel right away what movement made the milk spill.
She
learned in four days.
We also began helping Shanthi with her motor skills shortly
after she arrived. First, we got her a Johnny Jump Up and showed
her how to jump in it to music. She loved it would jump in
perfect
rhythm, changing her pace when the music changed time. Her daddy
taught her how to bear weight on her hands by bouncing her
playfully face-down on a rug so she would put her hands out to
protect her face. He would then bounce her on her hands. She
learned how to get to a sitting positions without our
instruction.
I taught her how to pull up on furniture by placing her hands on
the coffee table and bending one leg so one foot and on knee were
on the floor simultaneously and then pushing her up by her
bottom.
It only took one lesson! She learned to get into crawling
position
on her hands and knees about the time she learned to pull up, but
she would not move. She preferred to lie on her back and roll to
find toys. We tried "tummy time" but she soon began to fight us.
By
August, if we flipped her over on her tummy, she would let out a
pitiful little whimper and say in a confused, hurt voice, "Baby
cute." I'm afraid we were no match for her and she was probably
allowed to spend more time on her back than was good for her.
Shanthi began walking with us holding on with two hands in
January,
1991, and could walk holding on with one hand by May. In early
Fall, I taught her how to climb stairs while I held her hands.
As Shanthi's second birthday approached, she was rapidly
developing new language, charm, and musical ability but she was
stuck in her motor development. She was cruising around furniture
but still rolled to move and spent a lot of time lying on her
back.
We began to flip her over onto her stomach whenever she was on
her
back. Her daddy spent an entire weekend flipping her when she
least
expected it. Soon, she began to take flipping in stride and would
sit up whenever she was flipped. As a result of all this, two
weeks
before Christmas, Shanthi started crawling. Her crawling made her
mobile enough that we could now insist that if Shanthi wanted
Mama,
she must come to Mama. She was also required to make her way from
the living room to her highchair on her own when meals were
served.
Unfortunately, shanthi is now very much two and issues of
mobility
are mixed with the general issue of negativity and independent
thought. Shanthi cries, screams, kicks her feet, and crawls
around
in circles every time before she will come to me or to her meals.
She always gets where she needs to go, however.
Perhaps as a result of pushing Shanthi to move at home on
her
own, she now refuses to walk with me when we go to the store or
visiting, even though she had been doing so for months. Recently,
she had the Mother of All Tantrums on the wet pavement in the
middle of a parking lot. It went on so long that I decided that I
should take her home rather than wait it out. She won, and she
knew
it! I plan to wait a few weeks, then go walking with her outside
in
the driveway where tantrums won't matter so much.
Shanthi has quite a wide vocabulary now. She will ask her
daddy to play the piano and says, "See book" when she comes
across
anything with Braille on it. She celebrated entering the
"Terrible
Twos" by singing the entire Star-Spangled Banner substituting
"no"
for each word.
Shanthi has great dignity. Her daddy and I hope to be able
to
teach her the skills she needs to put her proud independence into
practice without crushing her spirit in the process.
I have learned that if I am to teach Shanthi a new skill, we
must both be ready. I will not always know just how I, as the
mother, get ready to move with Shanthi to the next phase of
development. I believe my membership in the Federation will
continue to give me the faith to believe that if I teach, she
will
learn.
THE FIRST ROCKY MOUNTAIN REGIONAL
PARENTS OF BLIND CHILDREN CONFERENCE
by Julie Hunter, President,Parents of Blind Children Division
National Federation of the Blind of Colorado
"Large streams from little fountains flow,
Tall oaks from little acorns grow."
David Everett
Big things can come from small beginnings. This proved to be
true when the Parents of Blind Children Division of the National
Federation of the Blind of Colorado developed a parent
conference.
Like a flower grown from seed, we planted an idea which grew with
roots of community support, a strong stem of group commitment
and,
finally, the blooms of new insight and shared enthusiasm.
"Expect Success" was the theme of the NFB Parents of Blind
Children Division conference made possible by the generous
financial support of the Denver Church of Christ. The conference
was held on December 13 and 14, 1991, in Denver, Colorado.
Parents
and children from Kansas, Utah, Idaho, Wyoming and Colorado
gathered at a Denver hotel to look at ways to help their blind
children achieve success in life. Speakers and panel
presentations
provided both inspiration and challenge to the parents, while the
children were occupied with their own learning experiences in a
program which included cane travel instruction (with street
crossings and bus travel), and cooking their own pizza for lunch.
The NFB Student Division held a concurrent conference for high
school and college level students.
An exciting line-up of speakers was pulled together for the
"Expect Success" conference. We were delighted to welcome Barbara
Cheadle, President of the NFB Parents Division and editor of
Future
Reflections, as our keynote speaker. Mrs. Cheadle spoke to the
parents and the students on Friday evening. Her address
"Blindness
--an Alien Experience?" started the members of the audience
thinking about their perceptions of blindness and how these
perceptions might be limiting their expectations for their
children.
The process of self-examination was continued on Saturday
morning with a panel discussion involving three successful young
adult women who shared some of their experiences in growing up.
Judy Dixon and Julie Dedan spoke about their backgrounds as
totally
blind children, while Marcie Page represented the trials faced by
a child with partial vision. Although the three had different
experiences in terms of how their parents approached their
blindness--from total acceptance to denial--they were united in
encouraging the parents to expect their children to compete on a
level with their peers.
The morning session got quite exciting with a presentation
by
Fred Schroeder, Director of the New Mexico Commission for the
Blind, mobility instructor and educator. Mr. Schroeder
reinforced
the importance of children being expected to perform on a par
with
their peers and he addressed the necessity of providing them with
the skills they need to compete. He challenged parents to
monitor
what other children the same age are doing, and then to work with
their own child so that they are prepared to carry out the high
expectations which we hold for them. Without the appropriate
adaptive skills, we have set the blind child up to fail.
Mr. Schroeder also addressed mobility and cane travel issues
with the parents. This was followed by a "Cane Travel Workshop"
where the parents were divided into small groups for instruction
in
the techniques of using a long white cane. Many questions were
answered and fears alleviated by the workshop session and the
follow-up with Mr. Schroeder.
"Expect Success" found its climax in the Saturday afternoon
session with Ruby Ryles, Washington state itinerant teacher and
doctoral candidate in special education. Mrs. Ryles gave the
parents a no-nonsense look at development from infancy to
adulthood
and addressed the issues involved in keeping a blind youngster
developmentally on target with his sighted peers.
As the conference drew to a close, the parents felt
stimulated
and challenged to take an aggressive role in preparing their
children for success. For many of us demanding that our children
be given the adaptive skills they need to compete is not easy.
It
was agreed that belonging to the National Federation of the Blind
Parents of Blind Children Division is one way to secure support
and
assistance. We now have a group of new members committed to the
process of working together to expect and achieve success for
blind
youth and adults through the support and the philosophy of the
National Federation of the Blind.
TOURS WITH ALLURE IN CHARLOTTE
by Wayne E. Shevlin
From the Editor: Wayne Shevlin is the First Vice President
of
the National Federation of the Blind of North Carolina and the
man
in charge of organizing the special tours during the 1992
convention.
It won't be long now until it will be time for our national
convention in Charlotte, and that means tours. We think we have
several things lined up this year that you will really enjoy.
Sunday, June 28--The North Carolina Zoo
The first tour is a visit to the North Carolina Zoo in
Asheboro, about a two-hour ride from Charlotte. This will be an
all-day trip. The North Carolina Zoo has been called one of the
best habitat zoos in the world. Visitors are not separated from
the
animals by fences but by moats and other natural barriers.
Besides
the aviary, where you spend time among the birds and small
animals
who live there, the Zoo includes gorillas, elephants, zebras,
giraffes, rhinoceros, many types of deer, and many other species
of
animals. You may take a tram from place to place in the zoo.
Wheelchairs and scooters are available for those who need them.
The
cost of this tour is $18, which includes transportation and
admission.
Carowinds
The other activity we have planned for Sunday is a visit to
Carowinds. This is an eighty-three-acre theme park outside of
Charlotte. The park includes water rides; a monorail; a sky ride;
and the Vortex, a five-and-a-half million dollar roller coaster
on
which passengers stand to travel along two thousand feet of
track.
In addition to the rides, there are also several shows offered
depending on the day. These include Country and Western,
Broadway,
and Tribute to Rock and Roll Shows. The price of admission is
$28,
which includes transportation, all the rides, and whichever shows
are playing on that day. This tour will also be offered on
Thursday
afternoon, July 2.
The Charlotte Tour
We have one more item of interest planned for Sunday. This
is
a tour of the City of Charlotte, which is known as the Queen
City.
This is a bus tour and includes a visit to the Mint Museum, the
first Mint in the United States; a ride through Myers Park, which
is listed in the National Register of historic neighborhoods; a
view of the rapidly-changing skyline of the city; and many other
points of interest. You can get to know Charlotte, the host city
of
the 1992 convention. This tour will be offered again on Tuesday,
June 30, and will cost $15.
Monday, June 29--The Railroad Museum
We have a tour of the Railroad Museum in Spencer, about an
hour-and-a-half from Charlotte. Spencer, halfway between
Washington, D.C., and Atlanta, was at one time the main repair
facility for Southern Railways and is listed as a National
Historic
site. This tour consists of such things as the roundhouse;
several
restored posh antique railroad cars; other transportation from a
dug-out canoe to a single-seater airplane; and the highlight of
the
tour, a ride on a train. On Monday, the train will be pulled by a
diesel engine, but if your plans allow you to take this tour on
Thursday, July 2, the train will be pulled by a restored steam
locomotive. As mentioned, this tour will be offered again on
Thursday, and the cost is $15 and includes transportation and the
price of admission.
The Charlotte Motor Speedway
For those of you interested in the NASCAR circuit, we have a
special treat planned for Monday, June 29, a tour of the
Charlotte
Motor Speedway, home of the second most attended spectator event
in
the U.S. See racing memorabilia from the past and present, and
visit the collection of vintage cars. Ride the same track that
has
thrilled thousands; visit behind the scenes; meet and talk with
one
of the drivers; and, to top it all off, enjoy a delicious dinner.
The cost of all this is only $45, which includes everything.
Sorry,
because of the NASCAR schedule, this tour can be offered only
once.
Tuesday, June 30--Old Salem
We will offer a tour of Old Salem, which is an eighteenth-
century town founded by devout Moravians and is recognized as one
of the most authentic restorations in the country. You can smell
the bread baking as you visit the Winkler Bakery, hear the gentle
taps of the tin smith's hammer, visit the Old Salem Tavern, and
smell the smoke of the wood fires from the Market Fire House.
Knowledgeable hosts and hostesses, some in dress of the period,
are
stationed in each building to welcome you, demonstrate crafts,
answer questions, and provide information. You will have plenty
of
time to shop for arts and crafts. There will be about a two-hour
ride each way to Old Salem, and the cost will be $25, which
includes transportation and the tour. Remember, we will also be
offering the Charlotte tour again on Tuesday.
Thursday, July 2--The Pig Pickin'
We have an activity planned called a Pig Pickin'. You might
well ask what's a "Pig Pickin'"? It's what we in these here parts
call a Bar-B-Q. North Carolina Bar-B-Q pork is unlike any Bar-B-Q
you have ever tasted. Along with the food there will be beer and
music provided for your Thursday evening entertainment. Y'all
come.
We will also be offering the Carowinds and Railroad Museum tours
again.
Please fill out the Tour Registration Form, which follows,
or
provide the following information along with your payment: tour,
date desired (if offered more than once), number of tickets for
each tour, and total payment due. We also need your name, address,
and telephone number. Please make your check or money order
payable
to National Federation of the Blind of North Carolina (NFB of
N.C.), and mail to NFB of N.C. Tours, P. O. Box 18087, Raleigh,
North Carolina 27619.
Tour registration forms and payment must be received on or
before May 15 so that we can make the final preparations. Check
with the North Carolina suite after you arrive in Charlotte for
the
convention for updated information about tours and about where to
pick up your tickets.
BLIND STUDENT BUCKS STATE RULING
Test Is Unfair, Teenager Says
Editor's Note: The following article was written by Tim Bass
and is reprinted from the January 19, 1992, Greensboro News and
Record, Greensboro, North Carolina. Just for the reader's
information, Miss Goodman's goal of working in a foreign embassy
was only recently made possible by the actions of the National
Federation of the Blind (see the October, 1991, Braille Monitor),
and the persistence of one blind man--Rami Rabby, former second
vice president of the National Federation of the Blind. It was
only
in late 1990 that the discriminatory barriers keeping blind
persons
out of the U.S.A. diplomatic corps were finally broken down. On
January 7, 1991, Rami Rabby began his six-month training as a
Foreign Service Office, and later that July he flew to London,
England to take up his first assignment at a U.S.A. embassy
overseas. He and one other blind trainee were the first blind
people to ever be accepted, trained, and placed on assignment as
U.S.A. Foreign Service Officers.
Gibsonville--A voice from Carey Goodman's electronic
wristwatch speaks up: "It's 3 p.m." Goodman, who is blind, pays
no
heed. She's busy talking about her carefully constructed plans
for
the future. What's time to a 17-year-old, straight-A student
who's
about to graduate from high school a year early and head for
college to study international relations?
"I'm looking much forward to getting out in the real world,"
she said. "It's just another step in the course of life to get
you
ready for your task in life. It's a natural progression. It's
like
asking a baby, 'Are you ready to leave your diapers?'" She's
ready.
By June, Goodman will have earned 20 high school credits, enough
to
qualify her for graduation as a junior at Eastern Guilford High
School.
But unless she bows to the bureaucracy and takes the state's
mandatory competency test--which measured academic skills at
about
a fifth-grade level--Goodman won't get her diploma. She says
sighted students with the same standardized test scores would
have
been exempted years ago; the state says her scores don't count,
in
part, because the tests were in Braille.
Her mother, Debby, said years of fighting the state over the
competency test have been frustrating. "Governor Martin can
pardon
a man on death row, but my daughter can't get a waiver on the
competency test," she said.
Carey Goodman calls the competency test "the biggest pain in
the neck that I've ever known." She repeatedly has refused to
take
it, saying she's been penalized because she's blind. "It's a
waste
of my time to miss an hour of honors history or AP biology to
prove
to them that I have a fifth-grade education," she said.
Indeed, her accelerated program would bear that out. She'll
have the necessary credits for graduation a year early because
she
took senior English and Spanish II at home this past summer in an
independent study program. This year, she's taking
advanced-placement biology, honors English, honors U.S. history,
French I, Spanish III, and Journalism. Her grades are all A's.
She's tops in her junior class with a 4.6 grade-point average on
a
4.0 scale. Her honors courses carry extra credit.
But Goodman doesn't want to talk about grades now. She's
focused on her mission: to work in a U.S. embassy in Germany or
the
Baltic states, shaping important decisions and encouraging people
"to know what's going on around them, to wake up and get with the
program. Somebody has to do something."
Goodman has been accepted at Florida International
University,
a Miami school that offers a major in international relations.
She
hopes to get a law degree from the University of Miami and a job
with the U.S. State Department.
"It's been a long time since I have run into a student who
is
as focused as she is," said Barbara Allman, Goodman's school
counselor. "She's so far beyond some of her classmates in her
thinking. She's just on a different plane"
A conversation with Goodman covers a lot of ground. College.
Diplomacy. The C-Span television network. Her family's frequent
trips abroad. The civil war in Yugoslavia. Her favorite book,
"The
Great Gatsby." Her independent studies to learn Russian, German,
and Hungarian. But she also talks about rock 'n' roller Rod
Stewart, football, "Saturday Night Live" and learning to play the
guitar left-handed. "I love 'Designing Women,'" she said. "Don't
get the idea that I'm this stodgy, stuck-up thing."
Goodman was born with a visual disorder called Peter's
anomaly. "I guess Peter was the first dude who had it," she said.
She can see some light and some color, but that's all. At school,
Goodman lugs around a Braillewriter, a 5-pound metal box that
resembles a small typewriter. She uses it to take notes in
class.
An adult aide, Barbara Carter, is on hand daily to walk
Goodman to class and the cafeteria and to keep up with the
equipment, supplies, and book bags stored in a special room
assigned to Goodman. Braillist Sheila McCain translates most
tests.
Because it takes so long for publishers to convert textbooks
to Braille, Goodman has gone entire school years without books.
And
when Braille books arrive, they can be daunting. A Braille copy
of
"The Adventures of Huckleberry Finn," for example, runs seven
volumes. The Bible is 18 volumes. Webster's New World Dictionary
is
72 volumes."When I was in fifth grade, they sent me a dictionary
that was eight volumes," she said. "They called it the pocket
dictionary."
Goodman lives within earshot of Southeast Guilford High
School
but transferred from there two years ago after several disputes
with officials concerning her blindness and her condition as a
diabetic.Goodman's parents have asked Eastern Guilford teachers
to
cut no academic corners for her. Their only request was that
Goodman receive assignments in Braille at the same time other
students receive theirs in print.
Her blindness is at the center of the controversy over the
competency test, which could stand between Goodman and her early
diploma. The N.C. Department of Public Instruction exempts
students
from the competency test if they score high enough on the
standardized California Achievement Tests in eighth grade. The
scores vary according to section, but generally students are
exempt
if the CAT scores are in the top 55 percent.
Goodman's overall CAT scores were in the top 5 percent. But
the state says her CAT tests were not standardized because they
were in Braille and were not administered with a timed deadline.
The state refuses to exempt her from the competency test.
"We have to recognize that test has no official standing,
because it was given in a non-standard manner." said William
Brown,
the department's director of accountability services. "We tried
everything we knew to present alternatives to the child that
would
accommodate her problem."
Goodman still can attend Florida International even if she
doesn't get her diploma because she doesn't take the test, but
she
concedes she'll "probably be forced into wimping out and taking
the
thing." She sees the test an another unnecessary obstacle that
she
must clear simply because she's blind. But she can handle that.
And
she can handle that. And she can handle it when people speak
loudly
around her--assuming that because she's blind, she's also hard of
hearing.
But she can't stand it when people believe her blindness
diminishes her intelligence."It's this attitude, 'She can't see,
she can't think, too,'" Goodman said. "That makes me mad, because
if there's one thing I can do, it's think for myself."
CHRISTINA
Editor's Note: The following item is reprinted from
Horizons,
the newsletter of the Parents Division of the National Federation
of the Blind of Maryland.
Hi! My name is Christina Shorten and I attend Ballenger
Creek School in Frederick, Maryland. I am 11 years old and I'm
in
the sixth grade. My favorite classes are chorus and social
studies. I enjoy chorus because I love to sing and the teacher is
nice. Social studies is interesting to me because I like reading
about the world's history and where things are located.
I am in the Odyssey of the Mind program. This is an
extra-curricular activity for students who like to expand their
knowledge. Odyssey of the Mind involves logic and hard thinking.
I like to read, write, and listen to stories in my spare
time.
I am attempting to get some of my short stories published in a
small magazine called Notions Potions. In the fourth grade I
sent
an essay in to the Maryland statewide writing contest. I was
chosen fourth place. I won 18 Kings Dominion coupons. I have
participated in the Read-a-thon for the past five years. Last
year
I was one of the five most improved [Braille] readers in the
United
States of America. I received $25.00.
In outdoor hobbies, I like planting gardens and exploring.
I
like to plant gardens because I like to grow things and be
responsible for living things. I like exploring because I never
know what's coming up next. Sports I like to do are water skiing
and beep ball. I have been water skiing for the last five years.
I am now learning how to cross the wakes. I have been playing
beep
ball for the last four years.
A few years back I had a modeling experience. I was chosen
to
represent blind people in a social studies book called
Communities
s Near and Far. I was given a Braille map and we went around the
city. This social studies book is for third graders.
When I become an adult I want to be a lawyer. I have chosen
this career because I like to help people have things done in a
fair way. In fifth grade our class went to witness some drug
trials. I think these hearings are both enjoyable and
educational.
I think our class learned a lot about what can happen to you if
you
choose to do drugs. In school I am taking the DARE program.
This
program teaches you about drug abuse, resistance and education.
It
is a full week program taught by a police officer.
Christina gave this talk at the POBC/Maryland luncheon at
[the
NFB of Maryland] state convention this year. This was her first
state convention. She is the oldest child of Teri and David
Shorten. She has two brothers, ages 3 and 1. In April, there will
be another addition to the family (hopefully a sister!).
Christina
has a delightful personality and a bright mind. It will be a
pleasure to watch her grow! We look forward to hearing from her
often.
WALT CONE: COMMUNICATIONS ASSISTANT
by Donovan Cooper
Reprinted from the National Federation of the Blind of
California newsletter, The Blind Citizen, Spring 1990.
Associate Editor, Donovan Cooper: Working blind people are
important. So are the jobs they perform. And so it is important
that we tell others of the work that blind people in California
are
doing. It is our intention to feature blind Californians and the
jobs they perform in an ongoing series of articles entitled
"Blind
Californians at Work". The publication of these articles will
demonstrate our pride in working blind people. It will extend to
them our congratulations. It will let other blind people know of
job opportunities and of careers heretofore thought to be
unapproachable by the blind. It will provide useful information
to
both job seekers and employers. Thus, it may help to diminish the
70% unemployment rate among the blind. This unemployment rate is
unacceptable, and we must do all that we can to reduce it.
Walt Cone is a relative newcomer to California (he recently
settled in Ventura County). Walt is from Arizona, having lived
there off and on for 36 years. His employment history includes
approximately two years in radio advertising sales and several in
food service as an operator of a snack bar. Walt has always been
an
avid Braille reader. You will see how this has contributed to his
success in his new position. Walt is now working for AT&T in
Woodland Hills, California. His job title is Communications
Assistant.
In his job Walt facilitates telephonic communications
between
speech and hearing impaired persons and the general public.
Speech
and hearing impaired people may type messages into a computer
terminal-like device called a TTD. When the message is intended
for
a hearing person, a communications assistant will receive the
typed
text through a similar device at the telephone company office and
convert it into spoken messages. These messages are delivered
over
the telephone to hearing recipients. Likewise, the communications
assistant will convert spoken messages into typed text and
transmit
this text to the speech- and hearing-impaired recipient.
Most communications assistants use a computer screen to read
typed text that is sent to them. Since Walt cannot visually read
a
computer screen, he uses instead a paperless Braille display to
read the typed text. He is then able to verbally deliver the
message to the hearing recipient.
Walt says that good Braille skills are critical for blind
persons wishing to perform this job. Synthetic speech output from
the computer has been tried but was not successful. The
communications assistant must pay attention to messages often
simultaneously transmitted by both caller and the recipient. This
becomes exceedingly difficult when one of those messages is
delivered in synthetic speech while the other is spoken over the
telephone line.
Walt says that with good Braille skills, blind
communications
assistants can be as effective as their sighted counterparts. It
should be noted that a typing speed of at least 40 words per
minute
is also required for this job. Walt's employer is pleased with
his
work and will welcome applications from other qualified blind
persons.
There are more job opportunities in this field than you
might
think, and the opportunities are growing. This is because of the
volume of calls converted by communications assistants each day.
There are now over 267,000 telephone calls converted per day by
communications assistants and transmitted to and from speech and
hearing impaired people in California. All communications
assistants in California work at the AT&T Office in Woodland
Hills.
Persons wishing job descriptions, salary, and application
information for this and other AT&T positions in Southern
California should call (800) 526-4144.
Congratulations to Walt Cone. He is doing well and has
opened
the door to additional employment opportunities for the blind.
IS THERE A GUIDE DOG IN YOUR FUTURE?
by Ed and Toni Eames
We co-chair the NFB of California Guide Dog Committee and
write a monthly column for Dog World Magazine. Toni has worked
with
three guide dogs over a twenty-five year period and Ed has worked
with two guide dogs in the past ten years. Our lives have been
enriched and our mobility enhanced by our partnership with our
dogs.
As a congenitally blind child growing up in the 1940's, Toni
was given no information about mobility techniques until she was
sixteen. At that time, she was given a short white cane and
minimal
instruction in its use. When she was twenty-two, Toni met a guide
dog user who demonstrated the benefits of mobility with a dog.
Shortly thereafter, she got her first guide dog and has chosen
this
mobility option ever since.
We all recognize and applaud the revolution that has taken
place in O&M training in the past four decades. Although nowadays
very young children are given white canes, the guide dog schools
are mired in tradition and have remained fixated on sixteen as
the
minimum age for guide dog training. In fact, some schools have
increased the minimum age of application to seventeen and
eighteen.
Foundation Mira, a French Canadian guide dog school, has
courageously broken with tradition. Last summer, a class of
twelve-
to fifteen-year-old youngsters were partnered with guide dogs.
American guide dog schools resist this break with tradition,
despite the success service dog programs have had for more than a
decade in matching children under ten who are wheelchair users
with
working dogs.
In a future Dog World column, we plan to focus on the issue
of
children with guide dogs. Please send us your views. If you are a
blind youngster, let us know how you think a guide dog would
benefit you. How old are you? How would you meet the challenge of
assuming the responsibility of caring for a dog and maintaining
its
high level of training? Would your parents encourage your
independence with a dog? How would you handle the potential
problem
of managing your guide dog in school? If you are the parent of a
blind youngster, what do you see as the benefits of a guide dog
for
your child? How old is your child? Does your child have the
maturity to take responsibility for the care of a guide dog? In
what ways would a guide dog enhance your child's independence?
You can write to us in Braille, cassette, or print. We will
include excerpts from selected letters in our column, "Partners
in
Independence." We can be reached at 3376 North Wishon, Fresno,
California 93704; telephone: 209-224-0544.
COMMENTS ON CCTV'S AND BRAILLE
by Mary Ellen Gabias
Editor's Note: The following comments were lifted from a
letter Mrs. Gabias had written about the usefulness of a CCTV
(closed circuit television--a powerful magnification device) for
a
particular partially sighted student. I have edited and published
her sensible, thought-provoking comments because they are
especially relevant to blind students who use, or are considering
using, CCTVs. Mrs. Gabias, a blind woman, is a long time leader
in
the National Federation of the Blind and an expert on employment
of
the blind (she is the former Assistant Director of Job
Opportunties
for the Blind).
There are several companies which provide closed circuit
televisions for enlarging print on a page. The cheapest I have
seen is approximately one thousand dollars. It's easy to spend
five thousand dollars or more on a complex system.
If a student is thinking about using a closed circuit
television system to read print, she should test equipment in
situations like those she is encountering in school. Sometimes
the
system will work very well under controlled showroom conditions.
The same equipment may be of little or no practical value when it
is taken home. It is usually helpful for someone considering the
purchase of equipment to get a thorough low vision evaluation
from
an optometrist or ophthalmologist who is skilled in helping people
find visual aids.
Magnifiers, telescopes, prisms, closed circuit televisions,
and other visual aids can sometimes help. It can also do a great
deal of damage. I am not suggesting that a person's eyesight
will
get worse if it's used. I am talking about a much more subtle,
and
in the long run more destructive, type of damage.
Most people use their eyesight to do a wide variety of
things.
Usually there are alternative techniques which can be used
instead
of eyesight and which work equally well. Someone who has ten
percent or less of normal vision (the generally accepted
definition
of legal blindness) can take two general approaches to solving
the
problem blindness creates.
The most tempting approach is to try to maximize remaining
vision. The second is to develop alternative techniques to
replace
vision in situations where it is inadequate. The first approach
concentrates on overcoming a deficit. The second approach builds
up strengths. I believe the second approach, that of developing
alternatives to vision is psychologically healthier and is more
likely to succeed on a practical level.
Let's look at an analogy. Suppose there is a young man who
is
an excellent student. He has great skill in math, English, and
languages. However, he is a disaster on the football field. For
one thing, he is very small. For another, he is not terribly
coordinated. What should the young man do? Should he build up
his
muscles and try to become a great football player, even though
his
size will keep him off most college or professional teams? Or,
should he play football for the fun of it and concentrate instead
on building up his academic skills so that he can become a
college
professor some day? You probably are saying that he ought to go
with his strengths. That doesn't mean you think he should sit
around without exercising and become flabby and unhealthy. It
simply means that you think he ought to plan a strategy that has
some hope of success. After all, it is just as respectable to be
a college professor as a football player. I think it's that way
with blindness, too.
Blind people who have some remaining sight should not ignore
it or pretend that it doesn't exist. On the other hand, they
should not spend so much time working on stimulating their
remaining vision that they neglect to develop the skills of
blindness that will have more practical value in the long run.
After all, it's as respectable to be blind as it is to be
sighted.
I hope the parents of the little girl you mentioned will
seriously consider teaching her Braille. There will simply be
situations where a closed circuit television isn't practical.
When
she grows up and attends a meeting, how will she take notes? If
she takes them in print, but can't read them back until she gets
home to her closed circuit television set, how will she refer to
the notes she's taken? What about giving a speech? She can't take
her television set to the podium with her. Even if she could,
she
would lose the value of having eye contact with her audience.
Braille could solve these and a number of other problems for
her. It is also faster, less tiring, and more pleasant than a
television screen. Someone who is blind and has not learned
Braille is forced to rely on print for everything from writing
recipes to keeping phone numbers. That often leads to increased
eye strain and headaches. It also means that the blind person
has
no maneuvering room if there is a change in vision. Even for eye
conditions which are stable, visual efficiency decreases with
age.
It gets harder to use limited vision as time goes by. As a
result,
many people gradually decrease the amount of reading they do as
they get older. They get out of the habit. Reading becomes a
chore, not a pleasure. With Braille, the partially sighted
student
can enjoy reading and still use the CCTV or other magnification
aids for specific visual tasks.
SPATIAL RELATIONS and the "LITTLE ROOM"
by Lilli Nielsen, Ph.D.
Special Education Advisor, Refsnaesskolen, Denmark
Editor's Note: We in the National Federation of the Blind
are
fond of saying that, given the proper training and opportunity,
blind people can compete on the basis of equality. This assumes
that if society will provide the opportunity, the blind
individual
will provide the motivation and drive. If this is true for blind
adults (and we know, through the experiences of thousands, that
it
is), is it not also true for blind children and
infants--including
the multiply disabled? If given the proper stimulus--the proper
environment and opportunity--do not blind and blind-multiply-
disabled infants, too, have the same innate urge and desire to
explore and learn as other infants have?
Not everyone thinks so. Many professionals believe that, as
one counselor of blind babies recently put it, "They [blind
children] are naturally self-centered and without motivation...."
Now, of course blind children are self-centered; ALL
children
are self-centered; that's common knowledge among parents and
other
early childhood specialists. But, unmotivated? Are blind children
so unlike other children that we must somehow instil in them a
desire for learning, as well as give them opportunities for
learning? Many professionals apparently operate out of this
belief.
But the lives of thousands of blind people and the observations
of
hundreds of parents tells us this is a lie, a false and harmful
myth. Fortunately, not all professionals buy into this myth; and
Dr. Lilli Nielsen seems to be one of them.
I first heard about Lilli Nielsen and the Little Room when I
received an invitation to a National Conference sponsored by the
Blind Children's Fund. Dr. Lilli Nielsen was coming to the U.S.A.
to do an in-depth five-day conference about the techniques and
equipment she had developed to help blind children--especially
blind, multiply-disabled children--reach out into the world and
begin to develop concepts about objects and spatial relations. I
was intrigued, but unfortunately could not attend the first
conference (yes, there is a second one coming up. See page --- in
the Hear Ye! section of the issue for more details.) So, I wrote
and asked Dr. Nielsen for information about the Little Room which
I could consider sharing with our readers.
Then, the VIP July, 1991, issue came out with a article,
written by a parent, about the conference. It contained
enlightening information about Ms. Nielsen and the philosophy
behind the invention of the Little Room. Portions of that VIP
article by Donna Tatro (entitled "I could not contain my awe and
enthusiasm") are reprinted below followed by the article Ms.
Nielsen submitted to Future Reflections.
Although I have never seen the Little Room demonstrated and
have no opinion whatsoever about its effectiveness or usefulness,
the concept behind it seems to be sensible. Here is the report on
the conference and Ms. Nielson's own description of the Little
Room
and her methods.
VIP Newsletter, July, 1991. By Ms. Donna Tatro:
...Dr. Nielsen took several traditionally accepted practices
and threw them out of the window, much to the dismay of several
seasoned teachers of the visually impaired. For example, it is
Dr.
Nielsen's belief and observance that a child can not be taught.
Rather, a child must learn for himself how something is done, or
it
will not register (author's word) for the long term. She is very
much against hand-over-hand anything, and she told us story after
story of instances in which a child learned something himself
using
her techniques.
Actually, it's erroneous to say that these are Dr. Nielsen's
techniques. She merely questioned herself time and time again as
to
why a child was not learning something or why a child was not
leaning something or why a child was behaving in a certain way.
When faced with a problem, she observed experts. her experts were
often found in a nursery or preschool and are what many would
term
as "normal" children. She made many many videotapes of typical
children in various stages of development, and through studying
her
tapes she picked up clues as to how the blind child could learn
something. She also made videotapes of her involved children and
watched them over and over again picking out subtle things,
sometimes only after watching a tape for the 80th time!
The thing that impressed me most about Dr. Nielsen was her
determination to work with and help the forgotten or ignored
children. She has chosen for 30 years to work with infants
through
adults who are multiply impaired and autistic. Those children who
are stuffed into the corners of institutions. When being
introduced
to children who needed help, institutions staff members would pass
up these children saying, "Don't bother with him, he doesn't even
have a brain." Lilli would say, "That is the child I want to
start
with!" And this "brainless" child would come alive under Lilli's
tutorage. it's no wonder that she was chosen to be the Special
Education Advisor for the Danish National Institute for the
Blind.
Dr. Nielsen notes that most blind or multiply-involved
children do not learn because they are not presented with the
right
circumstances in which to learn. Her book, The Comprehending
Hand,
is packed from the first page to the last with practical hints as
to how material and surroundings can be adapted so that a blind
child may be stimulated and encouraged in their development. The
Comprehending Hand was written because Dr. Nielsen has learned
that
"the development of the ability to grasp is of fundamental
importance, if a blind child is to get into contact with his
surroundings..."
Dr. Nielsen also wrote, Are You Blind?, to promote the
development of children who are developmentally threatened. I
thought this to be an odd title until it struck me that her title
is insinuating, and correctly so, that it is the teacher (or
caregiver) who can't see what should be obvious--the whys that
explain the reason a child has not learned something. It is up to
us to promote learning environments and situations in which our
children can learn.
The conference was laced with Dr. Nielsen's special, yet
serious, humor. For instance, she noted that if while standing
with
a blind person on a platform at a train station, we say, "The
train
is coming," as soon as it becomes visible to us, our blind
companion might think we must be pretty stupid because he has
known
for several minutes that the train on this track is coming; after
all he could feel its vibrations....
This trip to the U.S.A. was a first for Lilli Nielsen.
Although she is well known internationally and has given
"standing
room" only workshops on several continents, this was her first
presentation in North America. The list of attendees at the
conference demonstrates her popularity. Participants came from
coast to coast as well as Canada, the U.S. Virgin Islands,
Netherland Antilles, Mexico, and Trinidad.
THE LITTLE ROOM
by Dr. Lilli Nielsen
In 1981 an experience with a two-year-old self-mutilating
child made me think that the reason for this child's, and many
other visually impaired children's, difficulties in developing
was
maybe due to a lack of knowledge about the surroundings.
I designed the "Little Room" hoping that it would provide
the
visually impaired child with a frame of reference concerning
spatial relations and thus facilitate the child's learning about
the outside world. After observing the positive reactions to the
"Little Room" in visually impaired children who had other
disabilities, I decided to a scientific study on the effect of
the
Little room on 20 congenitally blind infants. This study was
conducted from 1984-1987.
In the experiment, each of the 20 infants were exposed to a
control environment and thereafter to the Little Room. Despite
the
fact that the control environment was arranged with the same
number
of objects as the Little Room, the infants were mostly passive in
the control environment but became much more active during stays
in
the Little Room. I concluded that the main reasons for the
Improvement were:
1. The sounds from the outside world were sufficiently
eliminated by the Little Room, enabling the infant to concentrate
on the object-based sounds he was producing inside the Little
Room.
2. The stability of the equipment and arrangement of the
Little Room provided the child with a certain feedback on each
movement. This facilitated the child's learning of the position
of
the objects and early object concept.
3. The echoes in the Little Room reinforced the child's
auditory experiences.
4. The Little Room was equipped with objects of tactile and
auditory qualities. This encouraged the child to explore these
qualities and thus establish early integration of the
kinesthetic-tactile-auditory sense modalities.
5. Objects were present in sufficient number enabling the
child to compare his experiences and to play sequence games.
6. Nobody was interfering in the child's activities as long
as
he was placed in the Little Room.
By means of the activities in the Little Room, 11 of the 20
infants learned that they were the producers of the object based
sounds occurring in the Little Room. The youngest to learn this
was 6-months-old (correcting for prematurity, 3-months-old).
Additionally, 15 of the infants commenced to explore and
experiment
with the objects hanging in the Little Room.
From my findings arose the awareness of the necessity of
equipping the Little Room according to the individual child's
needs. Nevertheless, the objects should: be of pleasure to the
child; be easy to grasp; have tactile and auditory qualities; be
visually inspiring; have comparable qualities; and be present in
such a number that the child has the opportunity to choose, to
combine his experiences, and to play various sequence games.
Since the completion of the study a lot more knowledge has
been gained concerning different ways equipping the Little Room as
well as about how the achieved spatial relations can be applied
to
environments other than the Little Room.
Literature:
Nielsen, L. (1980): "Spatial Relations in Congenitally Blind
Infants." Refsnaesskolen, National Institute for Blind and
Partially Sighted Children and Youth, 4400 Klundborg, Denmark.
Nielsen, L. (1991): "Spatial Relations in Congenitally Blind
Infants: A Study." Journal of Visual Impairment and Blindness,
January, 11-16.
Nielsen, L. (1991): Rummet og Jeg'et. SIKON, Denmark.
*The English version, "The Space and the Self" will be
available in 1992 at SIKON, P.O. 2555, Kristineberg 6, 2100
Copenhagen O, Denmark.
FAST FACTS ON INDIVIDUALIZED EDUCATION PROGRAMS
by Christopher Button
Editor's Note: The following item appeared in the 1991
Special
IEP Issue of Circuit, a newsletter of South Dakota Parent
Connection, Inc. Christopher Button, Ph.D., is a Senior Policy
Associate, Governmental Activities Office, in the national office
of United Cerebral Palsy Associations, Inc.
As the end of the school year approaches, many school
systems
will begin their annual review of Individualized Education
Programs
(IEPs) for students receiving special education and related
services. IEP meetings must be conducted at least once a year to
review and revise each child's IEP. Although these meetings may
be
held at any time during the year (including the summer),
frequently
schools review and revise IEPs towards the end of a school year
so
that they will be in effect at the beginning of the following
school year.
The last year has brought several developments which you
should consider as you prepare to take part in crafting the IEP
for
your child. As a result of an amendment last year to P.L.
101-476,
the Individuals With Disabilities Education Act (formerly the
Education of the Handicapped Act), IEPs must now consider the
transition needs of students with disabilities who are 14 years
of
age (or younger if appropriate) as they plan for eventual move
from
school to adult life.
In addition, on August 10, 1990, the Office of Special
Education Programs (OSEP) issued a policy letter which clarifies
the right of a student with a disability to assistive technology
services and devices under P.L. 94-142, the federal mandate for a
free, appropriate public education. This policy letter
(reproduced
in the Fall, 1990, issue of Family Support Bulletin), clearly
states that assistive technology can be considered special
education or related services. It can also be supplementary aids
and services which are designed to assist a student with a
disability stay in a regular classroom. Assistive technology
devices include thing that help students with disabilities in
their
daily lives--such as hearing aids and wheelchairs. Assistive
technology devices also include other things which may be less
familiar--such as changes in school equipment that make it easier
for kids with and without disabilities to learn together:
computers; adapted toys and computer games; remote control
switches
that allow kids to use computers and other equipment in the
classroom; and electronic devices that enable a child with
limited
speech to say whatever is on his or her mind. Examples of
assistive
technology services include help figuring out what devices can
best
assist a particular child, training in how to use the devices, or
help getting devices required.
IEPs must reflect the areas of transition and assistive
technology if they are appropriate for your child. However,
particularly where requirements or regulatory interpretations are
new, it is often up to you as a parent to ensure that these areas
are considered. It may be helpful to bring a copy of the OSEP
policy letter on assistive technology if you are requesting
inclusion of technology for your child. Contact Jenifer Simpson
at
(800) USA-5UCP if you need a copy.
FAST FACTS ON IEPS
The following facts are intended to help guide you as you
approach working with school personnel to develop or revise the
IEP
for your child:
As a parent, you should be included in IEP meeting as an
equal
participant. This means that the meeting should be held at a
mutually convenient time, and that you should have sufficient
notice that it will be held. The IEP should not be presented to
you
as a completed document, but must be developed jointly at the
meeting. Some schools prepare a draft IEP in advance of the
meeting
to use as a "working" document. If your school does this, request
that they provide you with a copy in advance so that you will
have
all the time you need to review what they propose. You may view
this document as a "starting point" for your IEP discussion. Do
not
be afraid to request additions, deletions, or other changes once
you get to the meeting. You may also develop your own "working"
document to bring to the meeting.
Remember that you have the right to request that certain
services, such as assistive technology, be included on your
child's
IEP. If you are requesting inclusion of specific services, it is
important to be prepared to discuss why you believe they are
important for your child's education.
IEPs must list all special education (specially designed
instruction) and related services (services necessary to assist
the
child to benefit from special education) which are required for
your child. Assistive technology (e.g., augmentative
communication
devices and/or training; a wheelchair; a computer) may be either
of
these things, depending on the individual needs of a particular
chile. Related services may also include such things as
occupational therapy, physical therapy, speech therapy,
transportation services, and even parent training.
IEPs must also specify how much of your child's education
program will be spent in the regular classroom. If modifications
to
the regular education program (sometimes referred to as
supplementary aids and services) are necessary to insure that
your
child can participate in regular education, those modifications
must also be included on the IEP. This applies to all regular
education activities in which your child participates--including
art, music, p.e., lunchroom, recess, and, of course, the regular
classroom for his or her age. Modifications might be as simple a
minor rearranging of the desks to allow for movement of a
wheelchair, or special seating arrangements for a child with
vision
or hearing difficulties. Or they can be more complex, including
such things as a computer, specially adapted switches,
modifications in how assignments are presented, an augmentative
communication device and training for the child and teacher in
how
to use it, or a classroom aid.
Remember that IEPs must be individually designed to meet the
needs of your child, not to fit pre-existing programs or services
for administrative convenience. Just because your child as a
disability does not mean that he or she must automatically be
segregated from friends, from classmates without disabilities, or
from the mainstream of school life. Nothing prevents a school
from
including students with disabilities in regular education
classrooms with necessary supports to ensure success.
Special education may consist of only specially designed
physical education for a student with physical disabilities, or
only speech/language therapy for a student who has difficulty
with
communication. However, it may include most of the education
program for a student with sever or multiple disabilities. The
critical point is that programs are individually designed.
Special
transportation needs should be specified, including such things
as
a lift-equipped bus, or even special training for the bus driver
to
deal with specific behaviors which might occur on the bus. A
personal attendant to assist in daily school activities such as
general mobility, toileting, or feeding should also be specified
if
appropriate. One parent included a specific timeline for the
school
to repair a broken cash register which was essential for her
daughter's vocational education.
Lack of availability of services or lack of sufficient funds
may not be used by school personnel to deny services, or to
eliminate a needed service from you child's IEP.
All required special education and related services needed
by
your child must be listed on the IEP, even if they are not
directly
available through the local school. The school system must
arrange
for everything listed to be provided, through contract if
necessary.
All services must be provided at no cost to you. The school
system may ask you to use your private insurance to pay for some
of
the services, such as speech or physical therapy. You do not have
to do this! Consider the long-term effects, such as lifetime
limits
on coverage, before you agree to use your own insurance.
Evaluation results are key to what is included on the IEP.
Therefore, it is critical that evaluations accurately reflect the
strengths and needs of your child. You may request an independent
evaluation of you child at the school's expense if you are
dissatisfied with the evaluation provided by the school system.
You may bring another individual, such as an advocate who is
familiar with the law, or someone who conducted an independent
evaluation of your child, to the IEP meeting.You may tape record
the IEP meeting if you choose.
The IEP is a written record of decisions you make jointly
with
school personnel regarding the special education program for your
child. It is a commitment on the part of the school to provide
specified services. You have a right to a copy of this document.
You may request a review of the IEP at any time. If you do
not
feel that your child's IEP accurately reflects the program he or
she needs, or if critical components of your child's program
(such
as assistive technology or transition planning) were not
considered, you may request another meeting of the IEP team to
consider these areas for your child. Make your request in
writing,
and keep a copy for yourself.
If your request for inclusion of specific IEP goals is met
with resistance or if you are dissatisfied with your child's
program, you may request a due process hearing. Attorney fees
must
be paid by the schools if the hearing officer decides in favor of
your request and you used an attorney.
Note: Each state has a Parent Training and Information
Center
(PTIC) which is federally funded to provide information,
training,
and support to parents...If you do not know how to contact the
(PTIC) in your state, please contact the National Parent Network
on Disabilities at (703) 684-6763 or the Technical Assistance for
Parent Projects (TAPP) at (617) 482-2915...Each state also has a
federally funded Protection and Advocacy (P&A) system to advocate
for persons with disabilities, including children....If you do
not
know how to contact your state P&A, please contact the National
Association of State Protection and Advocacy Systems (NAPAS) at
(202) 408-9514.
J.O.B.
Job Oppportunities for the Blind (JOB) offers free services
and assistance to high schools with programs on transition to the
world of work, to counselors of legally blind clients, and to
other
persons assisting a blind job applicant.
JOB is a joint project of the U.S. Department of Labor in
partnership with the National Federation of the Blind. JOB offers
free services to U.S. residents who are blind and looking for
work
in the United States. Services include a nationwide reference and
job referral service, a job hunter's magazine on cassette (the
JOB
Recorded Bulletin 8 times per year), recorded job information
literature, print materials for employer education, local and
national career-planning seminars, consultation on low vision
aids
and appliances, and introductions to blind peers employed in the
jobs of interest to the job seeker. JOB offers employers free,
nationwide job listings to locate competent workers who are
legally
blind, free consultation on cost-effective solutions for
reasonable
accommodation needs, and free educational seminars on hiring
legally blind employees.
JOB's volunteers are available in every state for
consultation
and information. You may also order the following JOB literature
from: J.O.B., 1800 Johnson Street, Baltimore, Maryland 21228. For
a sample JOB packet, call 800-638-7518.
SELECTED J.O.B. PUBLICATIONS
These publications are of special interest to high school
counselors of blind students, prospective employers of blind
youth,
parents of blind children, and blind teens who are seeking
employment or who are in the procees of making a career choice.
"Job Opportunities For The Blind Fact Sheet with "Blind
Persons At Work" (1 Sheet)
Facts about JOB plus a list of some jobs done by blind persons.
"What's A Job Seeker To Do? Some Practical Tips You Can Use"
(8 pages or 1 cassette: same title) Tips for a legally blind
person
on how to begin a job search.
"Making Points When The Interviewer Asks Tough Questions"
(5 pages or 1 cassette: "What's a Job Seeker to Do?") Suggestions
for talking to an interviewer about one's blindness.
"Insurance Coverage For Blind Workers: Some Facts You Should
Know"
(1 trifold sheet) Insurance rates do not go up if one hires a
blind employee.
"Taking The Mystery Out Of The ADA: How To Hire A Competent
Blind Employee"
(3 Pages) JOB will help employers comply with The Americans with
Disabilities Act through cost efficient reasonable accommodation.
Have You Considered...?
(27 Pages or 1 cassette) For employers/job hunters: stories of
blind employees on the job.
Access To Personal Computers For The Blind: A Review of
Speech
and Braille Software/Hardware Systems Designed to Permit Blind
Persons to Access the Video Display of an IBM Personal Computer
(prepared April 1, 1989. 45 pages or 1 cassette: same title)
Still
a good basic primer. Ask for updates on specific machines.
Press Release--National Braille And Technology Center (1
Page)
"Using The Skills Of Blindness On The Job" (9 Pages) These
real life scenarios (composite verbal pictures of actual blind
persons) show 4 workers using their "blind techniques" to
maintain
their competetive edge from wake-up alarm through to quitting
time.
BRAILLE READERS DESERVE MORE
by Cynthia Aronoff
Editor's Note: Reprinted from Contrast (a New York parents
newsletter).
As my son leaves for school each morning, I kiss him goodbye
and wish him a fine day. I know that he will work to the best of
his abilities alongside his sighted classmates, but instead of a
pencil he will use a Brailler and instead of reading print he
will
use Braille.
The vital importance of written communication and the power
of
the printed word in the education of our children is a given. The
task of having the printed word transcribed into Braille is often
a problem.
For sighted children, the presence of books is taken for
granted. The teacher hands out textbooks at the beginning of the
year; school and public libraries boast volumes; bookstore
shelves
are filled; and offers to join book clubs and to purchase
encyclopedias are stuffed into our mailboxes almost daily. These
luxuries do not exist for the Braille reader.
The visually impaired child is dependent upon others for
transcribed books, publications, and materials. It is a world
limited to "what's available in Braille" and what can be Brailled
if a transcriber is available. Books needed for school must be
ordered months in advance. And yet, come September, books may
arrive late or not at all. Sometimes the Braille does not follow
the format of the print copy. Sometimes two Braille copies of the
same print book arrive. Sometimes a text is deemed "too visual" and
is dropped altogether.
Parents are often overwhelmed by all the details involved in
their child's education. Securing books is not only a
time-consuming chore, but can also be a frustrating one. Here are
a few suggestions which might help organize this ongoing
responsibility:
1. Insist that books be ordered early in the school year (by
March if possible) for the following fall. This should include
textbooks as well as books from the classroom and school library
reading lists.
2. Insist that you be given a copy of all book orders
including the following: name of book, publisher, dates, where
the
book is being ordered from, phone number, and contact person if
available.
3. Since it is doubtful that anyone will follow up on book
orders over the summer, do it yourself to be sure. Check in July
and double check in August. Ask about the current status of the
book and when it will be sent.
4. Be sure to keep records which document all your efforts.
List phone calls, notes, etc., which demonstrate your
intervention.
5. If space allows books can be delivered directly to your
home rather than to the school. The advantage is that books can
be
checked off as they arrive. The disadvantage is that the books
will
have to be transported to the school. Should you care to use this
method, instructions must be given when books are ordered.
6. Since it is always better to be part of the solution
rather
than part of the problem, offer to help out. You can contact the
local library for the blind in an effort to obtain books on
school
reading lists. Help locate additional Braillists should they be
needed. If possible learn Braille and support the vision
teacher's
efforts.
Braille is a basic tool. To compete with sighted peers the
visually impaired child must become a proficient and fluid
Braille
reader. It is up to us, parents and professionals, to insure our
children this equal opportunity to learn, to grow, and to
succeed.
Literature Review
ITINERANT TEACHING: TRICKS OF THE TRADE
FOR TEACHERS OF BLIND AND VISUALLY IMPAIRED STUDENTS
Written by Jean E. Olmstead
Copyright 1991 American Foundation for the Blind
Review by Doris M. Willoughby
The well-chosen subtitle describes the scope of this helpful
book. There are a wealth of hints and practical suggestions for
efficiency and time saving for the itinerant teacher.
Little is said directly about the contents or methods of
actual instruction; but that is not the purpose of this book.
Efficiency and organization help maximize opportunity for
appropriate methods and content.
The following are some of the topics covered:
Books and materials
Scheduling
Record-keeping
Relationships and responsibilities
I.E.P.s
Time-saving memos and forms
Describing methods to classroom teachers and others
The suggestions are practical. They are especially relevant
to
itinerant work, and are valuable to both new and experienced
teachers. A positive philosophy is demonstrated in regard to
various placement options, and promoting genuine integration of
blind and visually impaired students. Resource lists at the end
of
the book are helpful and include listings for the National
Federation of the Blind and for our Handbook for Itinerant and
Resource Teachers of Blind and Visually Impaired Students. I
would
have preferred to see more hints and examples relating to Braille
and Orientation and Mobility, however, these topics are mentioned
enough to show that they are indeed part of the program.
Frequent samples of specialized humor contribute a great
deal.
For example, in one illustration a teacher and student, working
with a Braillewriter, are crowded in by piles of boxes, old
desks,
and trash barrels. This shows--as the caption wryly observes--
"Less-than-ideal working conditions."
Itinerant Teaching: Tricks of the Trade for Teachers of
Blind
and Visually Impaired Students is available for $00.00 plus S&H
of
$00.00 from: American Foundation for the Blind, 15 West 16th
Street, New York, New York 10011.
EDUCATION OF BLIND CHILDREN SPOTLIGHT ON IDAHO
by Ramona Walhof
Editors' Note: The following article is reprinted from the
Fall, 1991, Gem State Milestones, the newsletter of the NFB of
Idaho.Ramona Walhof is president of the NFB of Idaho, and a
member
of the national board.
Education of blind children underwent a major shift in the
1960's. There was a change from educating blind children in state
residential schools to enrolling them in local public schools so
they could live at home with their families. This phenomenon hit
federal law in the mid 1970's with the passage of 94-142. This
law
provides that local school districts are responsible for the
education of all children in the district, including the blind.
By
1992 school districts will also be required to provide
educational
services to disabled preschool children, so that the children
will
be better equipped to enter kindergarten at age five.
This responsibility has been frightening to some educators
and
some school administrators, but most are genuinely trying to do
what is best for the children, in spite of limited funding and
personnel.
In 1974 or 75, the State of Idaho funded ten positions for
itinerant teachers of blind children to be supervised by the
Idaho
School for the Deaf and Blind. Six of these teachers work with
school age children (5-21), and four work with preschool
children.
They are based in Idaho Falls, Pocatello, Gooding, Meridian,
Moscow, and Coeur d'Alene.
The time has come to consider whether or not changes are
needed. Members of the National Federation of the Blind of Idaho
are receiving an increasing number of requests for advice and
help
with the education of blind children. If changes are decided
upon,
it does not mean that anyone or any institution is bad. Even
when
people are doing their best, it is possible that needs are not
being met. Greater expectations and/or a change in approach may
require adjustments.
Itinerant teachers of blind children work with anywhere from
20 to 40 children enrolled in as many different schools. These
schools may be spread over an area requiring an hour or two of
travel from one to the next. Young blind children need Braille
instruction and cane travel instruction daily. These are
specialized skills. Most certified teachers of blind children
are
not prepared to teach both Braille and cane travel. Only two
school districts in the State (Coeur d'Alene and Boise) hire
teachers who can meet these needs.
In Boise this year there are three blind children who need
individual Braille instruction in early elementary school.
Classroom aids are being taught a limited amount of Braille in
order to reinforce the Braille instruction of the special
teacher.
The special teacher must provide some instruction to a number of
other children besides these three, and he cannot meet with each
of
them every day. The itinerant teachers may see young children as
seldom as once a week. Often no one in the local school
districts
is equipped to work with a blind child. If a classroom aid is
hired, training for that person may not be readily available.
Last spring I received a call from the mother of a two-year
old. The mother had been informed that, when her child started
to
school the itinerant teacher would probably meet with the child
once a week. This mother was horrified. How can any child learn
to read and write with one lesson a week?
Another mother called me to say that her blind four year old
was learning Braille letters and was motivated to keep right on
going. This mother felt unable to help her child continue to
learn
Braille. She also questioned whether the school could provide
adequate instruction in Braille for the child in kindergarten and
first grade. The school shared these concerns.
I received another call regarding a child who was assigned a
teacher's aid during the first few years of school. (When an aid
is assigned to a classroom where a blind child is enrolled, this
person should assist the teacher with the entire class and not be
assigned primarily or exclusively to work with a blind child.)
The
child in question had become a discipline problem and felt it was
his right to have an adult assigned to him. This attitude and
dependence must be undone. Classroom teachers need to learn how
to
work with a blind child in their classroom, and a classroom aid
can
be important however, blind children, like other children, learn
to
take advantage of situations when given the opportunity.
Federal law 94-142 provides that parents must meet with
school
representatives in an Individualized Education Plan (IEP)
conference yearly to plan special support and education for a
blind
child. However, many parents and many schools do not know what
is
reasonable to expect from a blind child or from the school.
Furthermore, many parents and many schools have very little
information about how to get what is needed.
In Idaho the School for the Deaf and Blind is supervised by
the Board of Education. Public schools are not. The Department
of
Public Instruction has more questions than answers about how
these
schools relate to one another. Public schools often do not know
what is reasonable to expect from the itinerant teachers. The
most
convenient thing for them would be to let the itinerant teachers
provide all the special instruction needed by a blind child.
This
is impossible, as shown above.
As a consequence, I have dealt with high school students who
could not write Braille with a slate and stylus, which is the
same
as a sighted student who could not write with a pen or pencil. I
have dealt with many students who can read neither small print
nor
Braille, but depend on a print enlarging machine and tape
recorders
to read. This puts them at a huge disadvantage both in school and
in other activities.
The National Federation of the Blind of Idaho passed a
resolution last spring at its 1991 convention recommending that
two
statewide consultants be hired by the Department of Public
Instruction to help local school districts arrange for and
provide
appropriate education for blind children. Obviously, the
intention
of this proposal is that the work of these consultants would help
to coordinate the work of the local school districts and the
itinerant teachers from the Idaho School for the Blind.
A number of people in Pocatello have requested that the
school
district should hire a full-time teacher of blind children as is
done in Boise and Coeur d'Alene. The need is there, but no
teacher
has been hired.
We need to establish standards for the instruction of
Braille
and cane travel and provide the resources to make it possible to
meet these standards. With the current arrangement in Idaho
nobody
has the responsibility to do this. No regulations specific to
blindness have been passed in this state, and Federal law is not
designed to be specific to every state.
In other words, education of blind children in Idaho appears
to be somewhat disjointed. If the parents are able to carry a
great deal of the load, it is possible for a child to get the
skills and support needed. Parents cannot be expected to be
experts in the education of blind children. Therefore, many
blind
children are not receiving what they need in school.
Blind children should have as much chance to learn to read
and
write Braille as sighted kids to learn print. Independent travel
with a white cane should be taught to every child beginning in
kindergarten or before. Blindness is a low incidence disability.
There are not so many children that we cannot provide them with a
good education. With a good education, blind children will
become
productive, self-supporting adults. Without it, they won't. We
must work together to improve opportunities for the blind
children
in Idaho.
Membership of the National Federation of the Blind of Idaho
passed the resolution (printed below) at the 1991 convention.
Taking the step outlined in this resolution could certainly
provide
needed information to parents and public schools. The NFBI
continues to look for information and ideas to improve the
education of blind children in Idaho. If you have problems,
solutions, and/or interesting experiences with blind children--
please contact me, Ramona Walhof, at the NFB/I office in Boise.
Your ideas and experiences can help. Also, study the resolution
that was passed. We would like feed-back on it.
RESOLUTION 91-04
WHEREAS, there are 12 teachers working with blind children
in
Idaho: 4 itinerant preschool teachers, 6 itinerant teachers
working with school-age children, and 2 teachers hired by the
Boise
and Coeur d'Alene school districts to work in those districts,
and
WHEREAS, there is a small residential program for blind
children in Gooding, and
WHEREAS, none of these teachers have responsibility for
advising public schools where blind children are enrolled
regarding
the best ways to meet the special education needs of these blind
children, and
WHEREAS, a consequence of this lack of consultants in the
education of blind children means that public schools have
inadequate information about the needs of blind children and what
they can do to meet these needs, and
WHEREAS, many (if not most) blind children enrolled in the
public schools throughout Idaho have inadequate instruction in
the
reading and writing of Braille and in independent travel, and
WHEREAS, this inadequate instruction is not brought about by
incompetent teachers, but rather by the lack of anyone to advise
and consult with public school systems, and
WHEREAS, paraprofessionals can be hired by local school
districts to reinforce instruction of itinerant teachers working
with children in early elementary school, and
WHEREAS, no training is available in Idaho for teacher aids
working with blind children.
NOW THEREFORE BE IT RESOLVED, by the National Federation of
the Blind of Idaho in convention assembled April 14, 1991, that
we
call upon the state of Idaho to add two positions in the
Department
of Public Instruction to hire two consultants to provide training
for paraprofessionals and advice to parents of blind children and
to local school districts regarding the special needs of blind
children and alternative methods of meeting those needs, and
BE IT FURTHER RESOLVED, that it shall be the policy of the
State of Idaho that every blind child shall have the opportunity
for quality instruction in reading and writing Braille and
independent cane travel,
BE IT FURTHER RESOLVED, that if necessary, legislation shall
be sought by the 1992 legislature.
COMING TO GRIPS WITH BLINDNESS:
A Mother Talks To Medical Professionals
by Loretta White
Editor's Note: Loretta White is the capable and energetic
president of Maryland's NFB Parents of Blind Children Division.
Her
leadership and organizational ability is giving the division new
zest and sparkle. This past Fall she and I, as representatives of
the NFB/MD, were invited to conduct an in-service training
session
for nurses who worked with children and babies at the
internationally known Wilmer Eye Institute at Johns Hopkins. This
article is a somewhat edited version of the talk she gave at that
in-service meeting. Loretta has since been invited to speak at
the
9th Annual Symposium for Opthalmoligcal Nurses being held in
Baltimore this Spring.
My name is Loretta White and I live in Anne Arundel County
with my husband and four children. Their ages are 16, 6, almost
5,
and almost 3. I am also a licensed daycare provider, so most of
my
time is spent with and around children.
My daughter Niki will be five in November. Niki has been
totally blind since birth. It's most likely due to retinopathy of
prematurity, but since she was adopted from India, we don't know
for sure. Her prenatal history is unknown, and the post-natal is
sketchy at best. She also has some neurological problems that
include a seizure disorder.
I'm here today to talk to you about Niki and our
experiences.
Hopefully I can help you better understand how to deal with a
parent who have a blind child. And if you have any questions
you've
never had the opportunity to ask parents, or felt comfortable
asking, please feel free to ask me.
I have done a lot of reading and talking to other parents of
blind children. I find that the problems and difficulties and
things that we have had a hard time coming to grips with are
pretty
much the same. And I have also learned that the sooner we, as
parents, can pull ourselves together and start constructively
dealing with our children's blindness, the better off our child
will be. Early intervention is crucial; and the earlier the
better.
The first thing we parent face is being told our child has a
vision problem. We may have suspected it or even known it; but
being told by the medical professionals seals it. And that
moment,
for better or for worse, will be permanently etched into the
parents brain.
In our case, Niki came home from India when she was five
months old. We took her to the pediatrician for a check up a
couple
of days after we got her. He told us that her eyes didn't look
quite right, so he wanted us to have her checked by an
opthalmalogist. The opthalmalogist he sent us to didn't do
children, so all he did was take a quick look and tell yes that,
yes, she has cataracts, and then referred us to a pediatric
opthalmalogist in Harrisburg (at that time we were living in
Pennsylvania). So I took Niki to the appointment by myself while
my
husband watched the other children. I was expecting to have her
seen and then scheduled for cataract surgery. I spent the entire
day there.
The doctor had a wonderful reputation, but I quickly found
out
in the waiting room that he had the bedside manner of Attila the
Hun. So I was pretty nervous to begin with. Once the technicians
had examined her eyes, and did their tests with the drops, and
did
the sonograms and what not, the doctor came in and quickly looked
at her eyes. Then, with the same demeanor one might use to
comment
on the weather, he told me that my daughter's blindness was total
and permanent. I'm sure he must have read the look on my face and
realized that I had not known. And then he added, "Well, it's not
that bad. It's like a Hershey bar. If you've never eaten
chocolate
before, you wouldn't miss it because you can't miss what you
never
had." Then, after a couple of minutes of very uncomfortable
silence, he gave me the name of a doctor who might try some
heroic
surgery; wished me luck; and left the room. I never saw this
doctor
again.
Somehow I collected myself and my baby and made the hour and
a half drive back to my home. It took me a long time to forgive
his
brutal honesty; but I will never forget it. I would have really
appreciated some compassion then. Also, I did not appreciate the
belittling of my child's condition. Things could always be worse,
but so what? Right now they feel awful, and any parent who just
been dealt such a blow is entitled to their pain.
As I was preparing for today, I asked myself what would have
made that moment easier? First, I would ask you--the medical
professionals--to find out how much the parent knows about their
child's vision problem. Explain the tests and procedures and
results in terms they can understand. Often we are told about the
tests in medical jargon. In the beginning we may not know enough
of
this medical jargon to know whether we have questions or not.
Also,
whenever possible, tell both parents together so they will have
each other to lean on. Use some compassion and respect with the
words you choose. I read about a survey that was done to find out
which medical problems we fear the most. Going blind was third.
We
only considered AIDS and cancer to be more devastating.
Some parents may need some quite time alone to collect
themselves before leaving. Be sensitive to that; but please don't
let them get away without referrals. Have literature available,
at
least from the NFB as an anchor to help them get their bearings
and
figure out what is next. They don't have to think about it or
look
at it at that moment, but they will need it soon.
There are a lot of emotions brewing at that moment. We might
be angry; and that anger may be directed at you simply because
you
are the bearer of the bad news, or because you cannot fix it or
make it go away. Or we may deny the problem. We may think that
you've made a mistake, our child can't be blind. And we may go
from
doctor to doctor trying to find someone who will tell us this is
not true, or that it will pass, or that some heroic surgery will
fix it. We desperately want that magical cure which will restore
our child's sight.
In our case, we went through the anger at the doctors and
also
at the adoption agency who had placed her. From what we were
later
told, anyone who examined her should have seen the detached
retina
and scare tissue mass. And yet we had paperwork that said she had
an opthalmalogic evaluation and that her eyes were in good
condition. To have known probably wouldn't have changed our minds
about her, but we certainly could have been prepared and avoided
the shock.
We also tried the heroic surgery. We took her to a doctor in
Tennessee who had had some success at reattaching retinas. We put
ourselves in debt mustering up the finances to make three trips
to
Tennessee; two for surgeries and one for a check up. We did all
this knowing initially that her chances of regaining any usable
sight were less than ten percent. At that time we were just so
frightened of blindness we were willing to try almost anything.
After, or maybe along with, the anger and denial, most of us
will then go through a grieving process. I is as if our child had
actually died. We have lost that perfect child we had planned for
and hoped for and longed for; and in a sense, what we feel we
have
left is a broken child. Our lives are permanently impacted and
forever changed. Not only our lives as parents, but our other
children, and to a lesser degree, the extended family. Things
will
never be the same again.
Some parents become angry at each other; one wanting to
blame
the other for being responsible for the child's blindness, or for
not caring enough, or for caring too much. Sometimes we parents
may
feel sorry; sorry for ourselves because we have this tremendous
burden and sorry for our child because she has to endure it.
Sometimes it's hard to get past that feeling of "My poor, poor
baby." But for our child's sake, we must.
Hopefully these stages won't last too long, and parents
won't
get stuck in any of them. But these are feelings we have, and we
need to deal with them so we can move on and constructively meet
our child's needs. And that may leave us feeling, "Oh my gosh,
what
now?" This is because we are now forced to deal not only with our
own child, but with our feelings toward blindness in general.
Before Niki came into my life, I had virtually no experience
with blindness. The only blind person I had every known was Tammy
who lived across the street from my family for a short while when
I was six. I can still see this eight-year-old girl in my mind.
All
she ever did was sit and rock, sometimes poking at her eyes. Her
speech consisted mostly of repetitions of what she had just
heard.
She never played with the other kids, or even went to school. She
just sat and rocked. As you can imagine, that memory haunted me
for
a while after we found out Niki was blind.
If the only experience you've had with blindness is seeing a
man begging on a city street; you're hardly going to feel excited
about your child's future. And if the parent doesn't have a
positive image of blindness, how can the child hope to develop a
positive self-image?
As we begin to deal with blindness, we parents will be full
of
questions. We wonder what children with little or no sight are
really like. Do they live in a world of darkness? Do they grow
and
develop like other children? Where do they go to school? Do blind
people ever get married? How do they earn a living? Can they be
happy? Can they live independently? What will happen to my child
when I die?
We may feel overwhelmed when we think of the long years
ahead
in which we will have to cope with what seems to be an
insurmountable number of problems involved in raising a visually
impaired child. But the sooner we get to work; the better off we
are and the better off our children will be. So we need for you,
the professionals, to get us steered in a positive direction from
the very beginning. We need to know--and most parents do
not--that
there is an infants and toddlers program offered through the
school
system in Maryland at no charge. We need to know how and where to
look for services for our child.
When we found out Niki was blind, we were given a diagnosis
and left on our own. Perhaps referrals were made, but we never
heard from anyone. So I began to look on my own. I got a copy of
Reach Out and Teach, probably at the library, and found a list of
sources for information on blindness; probably 50 or more. I made
a form letter requesting information and sent it to every one.
For
the next few months I got back all kinds of letters, pamphlets,
and
books. These were really helpful and I learned a lot from them.
Then one day I got a phone call from Barbara Cheadle from the
National Federation of the Blind. This was a turning point for me
and for my daughter, Niki.
Through the Federation I have met successful blind
individuals
from all walks of life and from all over the country. By
observing
and interacting with these people, I have been able to revise my
perceptions of blindness. Reading about it in a book will teach
you
here, in your head. But by living it, you learn it here in your
heart. Children learn what they live. I want my child to know in
her heart that she can be successful and independent because she
has grown up watching successful and independent blind adults
around her. Through education and interaction with the
Federation,
Niki can even take this for granted and think of her blindness as
a mere nuisance, many other Federationist now do.
As Niki's parent, the Federation has been my source of
information through literature; interaction with blind people;
and
very importantly, networking with other parents of blind
children.
Sharing what does and does not work has saved me lots of valuable
time and energy.
The Federation has also been there to advocate for Niki at
school. This is by means a small task. It has been my experience
that a child is special education can get all the services and
benefits entitled by law provided the parent can find out what
they
are and if they fight tooth and nail for them.
One last thing that I would ask is that, regardless of your
perceptions of how or what we are doing, you always give us your
encouragement. You see our child only from time to time. Teachers
and schools may change. Friends may come and go. Three years from
now you may not even remember our child's name. But we--the
parents--will still be there working for and with our child. A
pat
on the back or a "atty girl" can go a long way.
And what about the kids themselves? How do we ask you to
deal
with them? Although our daughter is multiply handicapped, she is
still very much the active, busy, noisy, drive-Mom-crazy
preschooler. Niki can identify each of her doctors and their
offices. Her pediatrician has the office with steps by the window
full of toys. When she visits her neurologist, she goes up the
elevator and gets to play with a bead toy while she waits. Her
dentist has a chair that lies down like a couch. And so on.
Most of the time going to the doctor is o.k. for Niki
because
the people she sees have seen her over a long period of time and
have learned and few do's and don'ts that make everybody more
comfortable. First, always identify yourself when you come into
the
child's presence, and let her know when you are leaving. When
someone comes into the room that Niki does not recognize, she
asks
over and over "Who is it?" until she finds out. Doctors and
nurses
who see Niki often have learned to talk directly to her whenever
possible. "Niki, do you want a toy?" rather than asking me, "Do
you
think she'd like something to play with?" It also helps to let
the
child explore the environment as much as is safely possible, and
to
use a lot of descriptive language that the child can understand.
We
may be embarrassed to let our child crawl all over and under
anything and everything, but this is how she learns. Your
permission lets us know you understand.
Also, tell the child what you are going to do to them before
you do it. And be as honest as you can. If it's going to hurt,
say
so. A child who can see knows what to expect when he sees the
needle or the eye drops, regardless of what he's told. We want
our
kids to trust us, so we have to be honest with them.
The last thing I would suggest is please do not presume that
a child needs help. Blind children are just like sighted
children,
they want to do it themselves! Wait until she asks for help or
demonstrates a need before you offer help. You wouldn't presume
to
help a sighted six- or seven-year-old in the bathroom; so you
probably wouldn't help a blind child that age either. If in
doubt,
ask.
And please remember to use the National Federation of the
Blind as a resource for yourselves--the medical
professionals--and
for the parents whose blind children are your patients. We are
here
to help.
NFB NET
by David Andrews
With more and more Federationists and blind children using
computers, speech synthesizers, refreshable Braille displays,
Braille 'n Speaks and modems, there has been increased interest in
the National Federation of the Blind offering a bulletin board
service. We have met this demand with the creation of NFB NET.
NFB NET is the official computerized bulletin board service
of
the National Federation of the Blind. A bulletin board system, or
BBS, is a computer system which contains files and messages on
various subjects. A person using his/her computer and modem can
access the bulletin board from home or work.
The NFB NET files include past and current issues of Future
Reflections, the Braille Monitor, other NFB Literature and state
affiliate and local chapter newsletters. The system also has
files
of interest to blind computer users, such as demo copies of
various
screen review programs and Braille translation programs. Further,
there is a selection of public domain and shareware software.
Finally, there is a file area for NFBTRANS-related files.
(NFBTRANS
is the Braille translation program developed by the NFB.)
Messages on NFB NET are categorized by topic. There is an
area
called Blind Talk for the discussion of issues, both
computer-related and noncomputer-related, of interest to blind
persons. Another area, NFB Talk, is for the announcement of
timely
information and discussion of matters concerning the NFB. These
discussion areas are also carried by a number of other bulletin
board systems around the world. There is also a discussion area
for
NFBTRANS and Charlie Cook, its author, has agreed to call in
periodically to answer questions and offer advice.
NFB NET is a part of Fidonet, a worldwide network of
bulletin
board systems that exchange electronic mail and discussion areas
or
conferences called Echoes. NFB NET will carry a variety of Echo
Conferences on job hunting, employment listings, home-based
entrepreneurial opportunities, WordPerfect questions and
solutions
and more. NFB NET also belongs to another network called ADANET
which contains a number of disability-related conferences,
including one which discusses the raising of disabled children
and
another which discusses the education of kids.
The parameters for NFB NET are 8 data bits, no parity and
one
stop bit. The system has a U.S. Robotics 9600 HST dual standard
modem and can handle baud rates of 300, 1200, 2400 and 9600. The
modem can also handle V.32, V.32BIS, V.42, V.42BIS, and MNP level
1-5 protocols. What all this means is that NFB NET should be able
to connect with most anything around.
NFB NET is the official BBS voice of the National Federation
of the Blind and exists to disseminate news and information of
interest to Federationists, other interested blind and sighted
persons, and persons working in the field of blindness. It is
also
our goal to facilitate information and idea exchanges via
computers
and modems.
The success of NFB NET will ultimately be determined by your
participation. If you have a computer and modem, give us a call,
leave messages in the different message areas and please
contribute
files and upload your state or local newsletters, if they are
available on disk. We look forward to seeing you on-line.
If you have questions about NFB NET or the National
Federation
of the Blind, please leave a message to the SysOp as you sign off
(our number is 410-752-5011) or write to us at:
NFB NET
National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230
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