Future Reflections Winter/Spring '97
Future Reflections Winter/Spring '97
Future Reflections
Vol. 16, No. 1
Barbara Cheadle, Editor
Winter 1997/Spring 1998
Contents
National Federation of the Blind Braille Readers Are Leaders Contest
1999 16th Annual Contest for Blind Youth
Defeating The Demons Of Doubt 1
by Julie Hunter
A Mother Fights For Her Son's Rights 7
by Keri Stockton
The Littlest Lobbyist 16
by Judy Jobes
Ohio Mom Goes To D.C. With The NFB 18
New Copyright Law Big Breakthrough For The Blind 21
Canes In Congress: The 1997 Washington Seminar 24
Michigan Parent Nominates Teacher Of The Visually Impaired For
Award 28
by Dawn Neddo
New Book Sends Wrong Message To Parents 32
by Carol Castellano
Newsline For The Blind Network: A Nationwide Newspaper Service
For The Blind 43
Tips For Using Newsline For Classroom Activities 45
DOS Or Windows? 47
by Carol Castellano
Virginia Parents Battle Teacher Shortage 48
Rocky Bottom Camp Of The Blind Hosts Southeastern Leadership
Seminar Of The National Organization Of Parents Of Blind
Children 50
by Sheila Compton
Book Review: Extraordinary People With Disabilities 52
book by: Deborah Kent and Kathryn A. Quinlan review by: Doris
M. Willoughby
K.I.D.S. Camp Comes To Maryland 53
Deaf-Blind And Determined 55
by Debra Conway
Changing Your Child's World With The Power Of Music 59
by Linda Zani Thomas
Book Review: A Girl's Best Friend 60
book by: Harriet May Savitz review by: Peggy Chong
These Canes Are History 62
by Patrick Barrett
Hear Ye! Hear Ye!<R>
Braille Literacy Provisions Now Part Of Federal Law 64
For more information about blindness and children contact the
National Organization of Parents of Blind Children
1800 Johnson Street
Baltimore, Maryland 21230
(410) 659-9314
Defeating The Demons Of Doubt
by Julie Hunter
Editor's Note: Julie Hunter is the Treasurer of the National
Organization of Parents of Blind Children and the President of
the Parents of Blind Children Divison of Colorado. Julie gave
the following speech at the state convention of the National
Federation of the Blind of Missouri, April 12, 1997. The
speech was an overwhelming success. It set the right tone for
the parents who had come to the convention to take part in the
revitalization of the Missouri Parents of Blind Children
Divison. It's reprinted here as the lead article because it
sets the tone for this issue, too. Read carefully and
thoughtfully it adds meaning and perspective to all the
articles that follow. But don't worry, it's not difficult
reading. Julie's story is compelling; it speaks to both the
mind and the heart. Here it is:
As you probably know, the motto of the National
Federation of the Blind is equality, security, and
opportunity. Ask almost any blind person in the world, and he
will tell you that he believes he should have these rights. It
sounds so sensible and so simple, but in reality this goal is
still a dream for many blind adults. Reaching the goal of
equality, security, and opportunity requires that a blind
person achieve the skills of blindness and the confidence that
he can compete in the sighted world. This means waging an
ongoing battle against prevailing attitudes and
misapprehensions about blindness. This is no easy task.
Historically blindness has been considered a tragedy of
immense proportion. In fact, surveys of the general population
reveal that only cancer and AIDS are more feared than
blindness! Even the most advanced nations of the world treat
the blind with pity and consider them the custodial
responsibility of the general public. It is no wonder that
negative attitudes prevail.
When parents learn that their child is blind or will be
blind, the news can be overwhelming. My husband and I were
devastated when we learned that our daughter, Lauren, would be
visually impaired, and greatly relieved to be told that she
would not be "blind." At the time, that distinction was
critical. We thought that meant the difference between a
possible "normal" life and a life where she would be forever
dependent on her parents. As the months passed with our baby,
our hope that she would only be mildly visually impaired began
to fade. She couldn't see at all outside in bright light.
Indoors she squinted and put her face down to her highchair
tray to pick up the Cheerio she'd dropped. Reality hit! We
were forced to begin redefining the future that we had
imagined for her. As with most parents our initial source of
information about our child's condition and her potential came
from professionals. Over the course of the first two years of
her life we were lined up with various therapists and
blindness professionals who gave us information about what was
in store for our child. We were given information about her
development, about her future education, and about the
adaptive techniques, such as Braille and the white cane, that
she would be taught. However, the professionals gave us no
confidence that these techniques could be as good as "sighted"
ways of doing things. We were still feeling sad that she would
not have a "normal" life. Now keep in mind that in the late
70's when Lauren was a baby, there was no NFB division for
parents of blind children. My husband and I did not know, nor
did we seek out, any blind adults. We relied solely on
professionals in the field of vision to guide us, and our
values and expectations were being shaped by them.
When Lauren began attending school, all kinds of adults
began to play a big role in her life. Since blind children are
now mainstreamed into the public schools and blindness in
children is rare, there is a good chance that the adults
meeting a blind child at school will have had no previous
experience with blindness. The janitor, the secretary in the
office, the school nurse, the parents of the other children,
and even the teacher may have never met a blind child before.
Especially when the children are little the tendency is for
adults outside the home to coddle them, lead them around, pick
up their things, put on their coats--in short, do everything
for them. The constant message to the child is that he or she
must be careful and not move around much without someone
guiding. The child is told that there are many things he or
she can't do and that he requires lots of help.
I remember a day when Lauren came home from preschool and
refused to pick up her toys. "Don't you know I'm blind?" she
said. It hadn't taken this smart little girl long to realize
that she was special at preschool, so why not at home?
Our eyes were really opened when she got to elementary
school and discovered that even the teachers of the visually
impaired had low expectations for our child. We were cautioned
by them that though our daughter would be learning Braille,
Braille reading is not as fast as print reading. The teacher
who introduced Braille to Lauren in kindergarten said that her
fine motor skills and sense of touch were not very good and
that she might be a slow reader.
"She may need to record her classes when she gets older,"
we were told. "Her gross motor skills are not good. She may
only be able to travel routes where she is in familiar
terrain."
Feeling that the professionals were being overly
pessimistic, we joined with some other parents and formed a
local parent support group. But we were supporting each other
by echoing the same things we were all hearing from the
professionals around us. The core belief that the alternative
techniques of blindness are equal to sighted techniques was
missing.
Even though those teachers and professionals, and
probably even the janitor, would have said that they believed
in equal opportunity for blind children, deep down they
harbored the unspoken conviction that being blind is inferior
to being sighted. Many teachers and professionals don't truly
believe that the adaptive skills they are teaching will allow
the student to compete equally with his peers. When they don't
believe that the adaptive techniques have equal merit, the
tendency is to teach them as a last resort.
In this perspective, the more vision the child has the
better chance he has of succeeding. Therefore, anything which
can be done to make the low vision child appear less blind
will be better for the child. They will keep him reading
print, even though he tires quickly and gets headaches. Since
a cane would label him as blind, don't encourage him to carry
one, even though he may trip on curbs. And if the child is
totally blind, well certainly teach him Braille and give him
a cane, but don't expect him to read very fast, don't make him
do all those math problems, and take him sighted guide
whenever possible so that he won't look so blind in front of
others.
What is the future for these children? As parents new to
the blindness experience it is very hard to step back and
critique how our children are being treated. After all, the
professionals have masters degrees and doctorates.
At the time our child started school we didn't realize
that there was any need to critique. But we began to feel very
uncomfortable about some of what was going on. Our child was
not expected to be independent. She was guided by classmates
around the school or she trailed along the walls. The mobility
instructor taught her various defensive techniques to protect
her face and hands, but said that she lacked the motor
coordination to have a cane.
The people around her were so caring it was hard to
criticize them. The professionals had matters under control;
everything was normal, she was doing fine. But we began to be
concerned that Lauren seemed immature and lacking in
self-confidence.
Fortunately, we also began reading Future Reflections,
the NFB's new (at the time) Parents of Blind Children Division
newsletter. What we learned reinforced us in our resolve. We
solicited the NFB's help in getting cane instruction for
Lauren over a summer, and in the second grade she returned to
school with a cane, much against the advice of the
professionals at that time.
Ever since then her father and I have tried to educate
school personnel and others to see the implications of their
actions and words. But we could only influence the most
obvious examples of low expectations and negative attitudes.
Since it is impossible to control the multitude of
encounters our children have with prejudicial attitudes about
blindness, we must do the next best thing. That is, we must
involve our children in an understanding of what is going on
around them. We must teach them to recognize that behavior
which appears nice and helpful may be patronizing and
custodial. We must teach them to be polite, but to take
responsibility for their independence.
Since we sighted parents are only just learning to
recognize these negative attitudes, we need our friends in the
NFB to help us understand. Let me give you an example.
While driving around in Denver I have from time to time
come across signs posted in various neighborhoods which read
"Blind Child at Play." Before I had a blind child I had always
considered that the sign was a prudent safety measure meant to
protect a child who was at a disadvantage in seeing
approaching cars when playing near the street. What could be
wrong with that? I never for a moment considered that such a
sign might reflect a negative attitude toward blindness. But
my friends in the NFB pointed out to me that both blind
children and sighted children must learn to observe rules when
playing near the street and if they observe the rules they can
all be quite safe. Blindness in and of itself does not make a
child more likely to be injured. Therefore, by implying that
the blind child is at higher risk, the sign was actually
reinforcing some negative attitudes about a blind person's
ability to navigate safely in his environment. If a sign is
needed to caution drivers it should read, "Children at Play."
The negative attitudes about blindness are so pervasive
that when society comes across a successful, independent blind
adult, that person is described as "amazing" or "incredible."
The expectation by the public is that blind people are not
capable of being equal, and all too often that expectation is
realized. But, what about those "amazing," "incredible" blind
people who have responsible jobs, raise families and travel
independently in their communities? What is their secret? As
parents, that's what we want to know because we want our kid
to be one of those success stories.
Speaking for myself, I think I found the answer. It lies
within the National Federation of the Blind. No one can do as
much for a blind child's belief in himself as an adult blind
role model. Period. I don't care how diligent parents and
teachers are in teaching the adaptive skills of blindness or
how high their expectations, without another blind person
showing how it all can work in the big world, there will
always be a measure of doubt within the blind child.
As parents it is almost impossible to rid ourselves of
all our doubts no matter how much we want to. We need the
"real" experts, the competent adult blind members of the NFB
who have "been there, done that", to show us and our kids that
it is possible to achieve true independence.
For example, when my daughter, Lauren, was sixteen she
had a summer job at a day care center helping with the
toddlers. She would take the bus to work, a straight shot on
the bus line without any transfers. Nothing for mom to worry
about. One day she called me from work. She'd lost her wallet
on the bus. "It's probably long gone," said I.
"No," she said "I got it back."
"Really?" I said. "How did you find it?"
"Well," said Lauren, "I called the lost and found office
for the transit system. They said that my wallet had been
turned in! I called for the bus route and took a bus downtown
to their office and got my wallet."
This was my totally blind teen-ager who took a bus to
downtown Denver and located an office on the fourth floor of
an office building--all by herself! Now, mind you I would like
to take credit for the independence and self-confidence
illustrated by this story, but I cannot. If Lauren hadn't had
several years of travelling with her friends from the NFB, I
doubt that it would have happened that way.
After I hung up the phone that day I felt such joy, and
stifled fears. Had she asked me first, I would have had
trouble not expressing my fears about her travelling in
unfamiliar territory downtown. I would have been afraid that
she'd get lost. Although those fears might have been felt by
any mother of any sixteen-year-old girl, mine would have been
fueled by those nagging, lingering doubts.
Now, don't get me wrong. We had worked hard through the
years to encourage Lauren's travel skills, always urging her
to use her cane and practicing street crossings, etc. But it
was our friends in the NFB to whom I gave thanks on that day.
They were responsible for giving Lauren true confidence in her
skills so that she was able to handle the trip to the lost and
found without question. I finally knew for sure that she would
do just fine in life, without her mom and dad!
Now I have people saying to me that Lauren is amazing. A
nineteen-year-old functioning independently in college should
not be considered amazing. She is a success because she went
to college with excellent Braille skills (including slate and
stylus). She had the skills in orientation and mobility needed
to travel the campus independently. She had experience in
finding and using readers, and she had the confidence to
advocate for herself in working and planning with her
professors. The fact that others, including many of her peers,
see her as amazing shows me that attitudes have not changed
very much over the past twenty years. What we should be
working toward is a day when competence and self-confidence in
a blind person are seen as the norm by the sighted world, and
not as something amazing.
As parents we have our work cut out for us. We must
become familiar with the adaptive skills our children are
learning so that we can be sure they are being taught in
school and encourage their use at home year-round. We must
maintain high expectations for their performance. Then, while
keeping our own demons of doubt at bay, we often have to
battle against an educational system that perpetuates negative
stereotypes of blindness. It is not easy to question
professionals. It is also not easy to examine our children's
experiences outside the home and call attention to subtle
discrimination. We have to be constantly aware of situations
when our children are being denied opportunities for
independence and equal treatment. All those "helping" hands
can have dire negative consequences on a child's self-esteem,
and parents have a responsibility to do what they can to
intervene.
This is a huge responsibility, and that is why you need
the Parents of Blind Children and the National Federation of
the Blind. You need to get involved with fellow parents in
your state Parents of Blind Children division. By sharing and
networking, those who have insights can share with those who
are unsure. Then you need to get involved with the NFB in your
community. Go to NFB chapter meetings and meet the adult blind
members. Find out what the issues and concerns are for adult
blind folks living around you and around the country.
But it could happen that the blind in your community are
all elderly blind who grew up sighted and don't know much
about blind kids. They may or may not have good skills and be
good role models. That's why it's also important to get
involved in the NFB at the state level. Be sure to go to the
state convention and find some blind adults you admire and
develop relationships.
As your child gets older be sure that he or she has the
opportunity to develop a social relationship with an adult
blind person. Go to the NFB National Convention, and you will
expand your knowledge and contacts even further. This sounds
like a lot of effort, but what you are doing is becoming a
part of a big supportive family, a family which will encourage
you and be there for you and your child.
My child is a young adult now and there is no greater
comfort to me than to know that she has the love and support
of the National Federation of the Blind for as long as she
lives. The NFB will be there for her when I cannot.
Let me close with a quote from Ralph Waldo Emerson who
once said, "The task ahead of us is never as great as the
power behind us."
We have the power of the National Federation of the Blind
behind us, now let's get to work!
A Mother Fights For Her Son's Rights
by Keri Stockton
Introduction
by Barbara Cheadle, Editor
A conference at a beach resort in August with free
full-time child care services--what more could a professional
single parent want?
That's what Keri Stockton, a physician's assistant and
the single parent of seven-year-old Nicolas, thought when she
made her reservations for August, 1996, at the Ocean Dunes
hotel in Myrtle Beach, South Carolina. But the ideal situation
began to turn into an ordeal even before Keri arrived at the
hotel.
You see, Nicolas, a typical rambunctious and curious
seven-year-old, also happens to be blind. Keri, who has been
an active member of the National Federation of the Blind since
Nicolas was a toddler, views blindness as no big deal. She
neither makes a point of telling people about his blindness,
nor does she avoid it. It sometimes comes up in conversation,
sometimes not. For one reason or another his blindness did
come up when Keri made a preliminary call to the hotel to sign
Nicolas up for the day care service. And that's when the
trouble began.
Nicolas, she was told by the day care director, would not
be allowed in the program--for his own "safety" of course.
When Keri appealed to the hotel management, she was told it
was out of their hands. The hotel contracted with the RRTM
company to provide the day care service; therefore the hotel,
so management assured Keri, had no control over the day care
service's policies.
Other parents with less knowledge about the rights and
capabilities of the blind might have accepted this verdict or
settled for less than full participation in the program, but
not Keri. An active, knowledgeable member of the National
Federation of the Blind and its parents division--the National
Organization of Parents of Blind Children (she is the
president of the West Virginia Parents of Blind Children)--
Keri knew the difference between legitimate safety issues and
discrimination. This was discrimination. And so the battle was
on.
First, Keri tried reason and negotiation. When that was
only partially successful, Keri called the National Federation
of the Blind. By that time Keri had negotiated to get Nicolas
into the program as long as the children stayed on hotel
property. The final point of disagreement was whether Nicolas
would go, with no special supervision or liability waiver,
with the other children on a much-anticipated trip to Water
World on the final day of the conference.
Here is Keri's account, as edited from a letter Keri
wrote two days before the water park trip was to occur and
sent to Mr. Anderson, the Manager of the Dunes Hotel.
Following Keri's account we have reprinted the letter
sent by David Houck, Executive Director of the National
Federation of the Blind of South Carolina, to the hotel
management. Mr. Houck enclosed with his letter a copy of the
pertinent portions of the South Carolina White Cane law and an
article about the NFB of South Carolina's victory in a lawsuit
against a cruise line which had discriminated against a blind
man in South Carolina. (The White Cane Law is civil rights
legislation which the NFB sponsored decades before the
Americans With Disabilities Act was passed.) Here they are:
August 14, 1997
Dear Mr. Anderson:
Some time ago I received information from the NCAPA of a
conference for Physician Assistants being held at Ocean
Dunes/Sand Dunes Resort, Myrtle Beach, South Carolina, from
August 11-16, 1996. The information stated that a children's
program would be available each day, "including healthy beach
and water games, exploration trips to fun-filled amusement
parks, and other downtown attractions." As this seemed to
meet both my professional needs as well as my child care needs
(I am a single parent), I made reservations for the conference
and with the Ocean Dunes hotel.
Two weeks before my seven-year-old son, Nicolas, and I
were to set out for Myrtle Beach, I called Guest Services to
sign Nicolas up for the day care activities. During the
conversation it came up that Nicolas was blind. At that point
Ms. Hanna Moore, the child care director, said that Nicolas
would not be allowed to participate in any child care
activities at the hotel. The college-age staff had no
experience with blindness, she said, and would not be
comfortable assuming the responsibility for a blind child.
I protested that Nicolas did not need a different level
of supervision and that he was quite capable of handling and
enjoying all activities listed in their "Sandy's Club" flyer.
I was told it was no use to protest; his exclusion was "for
his own safety."
One week later I called again to try to reason through
this situation. I spoke at length with both Ms. Moore and with
Chris, one of the counselors. They finally agreed (rather
reluctantly) to let Nicolas attend the child care program
while in the hotel. However, he would not be allowed to
participate in any water activities or go on any trips away
from the hotel. As before, this was based solely on his
blindness. Again I was told, "You must understand, Ms.
Stockton, that it is only your son's safety we're concerned
about." The implication was clear that I was not concerned
about my child's safety! As with the previous phone call,
nothing was resolved. And so we drove to Myrtle Beach with
some reservation about the reception Nicolas would receive
from the "Sandy the Sea Gull" child care staff.
Sunday, August 10, we arrived at the Ocean Dunes in the
evening, and registered for our stay. Nicolas registered for
the Sandy Sea Gull Club and received his t-shirt, cap, and
wristband with excitement and pride. We then walked over to
Sand Dunes to meet the child care staff. We met with Ms. Hanna
Moore, Chris, Kathleen, and other staff. Nicolas and I were
again told by Chris and Ms. Moore that Nicolas would not be
allowed to participate in any water activities or off-grounds
activities due to his blindness. Ms. Moore said that if I
hired (and paid) a one-on-one child care provider to watch
Nicolas and provided assurances to the hotel and the RRTM
company that they were not liable for Nicolas, then they would
allow him to go to the water park trip. One of the child care
staff, Meridith, did offer to go with Nicolas to the water
park (at my expense, of course). However, arrangements were
not finalized since I still felt that all Nicolas needed was
the same level of supervision appropriate to sighted
seven-year-old kids.
On Monday I met with you and Mr. Ian Raymes, Sand Dunes
assistant manager. I explained the situation and told you I
had never run into such overt discrimination, and certainly
hadn't expected to find it at the beach! I also told you how
deeply concerned I was about the damage this episode is doing
to Nicolas; he knows what's going on; and he knows that his
sighted peers are not subject to this. You told me that Ocean
Dunes/Sand Dunes had no responsibility for, and could do
nothing about, the child care "policies"--your word--which
exclude Nicolas' full and equal participation. This is so, you
explained, since the hotel contracts for these services. You
then suggested I visit the water park so I would see just why
the child care staff was concerned. You said the water park
might not even let Nicolas come at all and that this would not
surprise you.
So, I called the Myrtle Waves Water Park and talked with
Karen, the manager. She said you'd called and that she told
you that their policy was to make the water park available to
all people and that Nicolas would certainly be welcome. The
water park, she said, has several blind patrons, including
twin children from Conway, South Carolina, who are season
members. Nicolas and I went down later Monday afternoon. After
Karen showed us around the water park, Nicolas swam on almost
all the rides for about three hours. He rode on the slow
river, the wave pool, two slides (one with a tube and one
without) as well as his favorite--the Rapid Racing River, a 10
mile per hour stream of water. He enjoyed them all, and needed
no help beyond what other kids his age need in order to ride
them successfully.
Much of my time on Tuesday was spent in the Guest
Services office. Nicolas, however, was allowed to participate
in the day care services--the Sandy Sea Gull Club--on Tuesday.
He played games, searched for shells, painted shirts, and ate
pizza along with the other kids. He had a great time! I was
delighted to hear that he'd been allowed to participate in the
swimming session in the hotel pool. Nicolas was very excited,
and Chris and the other staff said he'd done well--no
problems. But still, the water park was out.
Wednesday (today) Ms. Hanna Moore approached me at
breakfast and said that Nicolas would not be going on the
water park trip with the same supervision as the other kids.
She said I had to hire and pay for a one-on-one child care
person if he were to go. It was the company's decision. "You
have to understand," she said, Nicolas is "special" and her
company feared "liability." I told her that I did not have to
understand or accept discrimination; in fact, I would never
understand or accept it.
I dropped Nicolas at the child care area to hunt sea
shells and went immediately to your office where I met with
you and Mr. Daniels, the Ocean Dunes Assistant Manager. Again,
I was told that you have no control of, or responsibility for,
the actions and decisions of the RRTM company with whom the
hotel has a contract for child care services. You said certain
groups of children were denied service by RRTM, usually
children with behavioral problems. "It's their policy," you
said. Mr. Daniels said that there had been other handicapped
kids in the child care program, but that their mothers always
stayed with them. He asked me if I could go to the water park
with Nicolas. I told him that I had come to Myrtle Beach for
a conference but had actually been able to attend very little
of it due to this situation. Nicolas was on the list of kids
to go to Myrtle Waves. He had sat with the other kids on
Monday and heard how, if you were good--really good--you'd get
to go to the water park, the most fun place around. And
Nicolas had been good all week; although, in his case,
goodness was not the criteria for going--vision was.
Mr. Daniels then asked if I would be willing to sign a
waiver of liability, so that RRTM and the hotel would not be
held accountable if Nicolas were injured or lost. I said I
could not sign such a waiver as that implied that Nicolas
needed a different level of supervision than the other
children. I stated again that he needed the same supervision--
not more or less--than the other children.
As I have tried repeatedly to resolve this issue
personally without success, I have contacted the National
Federation of the Blind, an organization of blind persons
which has much experience in combatting discrimination on all
levels and works to insure for all blind people (including
blind children) security, equality, and opportunity. I
understand you will be hearing from them by fax, and I hope
this input will help to resolve this situation ASAP.
Under the federal Americans with Disabilities Act (ADA),
and the South Carolina White Cane Law, Nicolas is entitled to
equal opportunity and participation. If he is denied equal
opportunity to attend the full child care program of Ocean
Dunes/Sand Dunes due to his blindness, this hotel and its
contracting company, RRTM, have violated both these state and
federal laws. I am still hopeful this situation will be
resolved without any such violations, but I do stand firm. I
will not waive Nicolas' rights under these laws.
Please contact me as soon as possible, as the water park
trip, as you know, is scheduled for Friday the 16th, from 9:30
a.m to 2:00 p.m. I look forward to our next meeting on this
issue and hopefully to its appropriate resolution.
Sincerely,
Keri Stockton
cc: Barbara Cheadle, President, National Organization of
Parents of Blind Children, National Federation of the
Blind
David Houck, Executive Director, National Federation of the
Blind of South Carolina
Don Capps, President, National Federation of the Blind of
South Carolina
That's Keri's account up to Wednesday of her week at the
Sand Dunes Hotel. On that same day David Houck, on behalf of
the NFB of South Carolina, faxed the following letter to the
hotel. With the letter he attached a copy of the pertinent
sections of South Carolina's White Cane law and an article
about a similar discrimination situation which the NFB of
South Carolina successfully settled out of court. These items
are reprinted following this conclusion of the story by Keri
Stockton:
CONCLUSION
The morning after I called the NFB, Nicolas and I headed
out to Mr. Anderson's office, toting a book tape recorder,
headphones, five recorded books from The Wizard of Oz series,
and a large bag of fidget-toys. We went prepared to camp out
the entire day in his office if necessary. I had no intention
of leaving until Mr. Anderson agreed to let Nicolas go, on
equal terms, with the rest of the Sandy the Seagull Club kids
to the water park.
We entered the outer office and promptly were announced
to Mr. Anderson by his secretary. Mr. Anderson greeted us, and
we entered his office and sat down. As I started to unpack Mr.
Anderson spoke, "Nicolas is going to the water park," he said.
I stared at him for a moment and then carefully asked,
"Under what conditions is he going to the water park?"
"The same as all the other kids," he replied.
I sat there not quite believing what I had just heard.
Mr. Anderson explained how he had received a lengthy fax from
this group called the National Federation of the Blind of
South Carolina. The fax, he said, had referred him to the
Americans with Disabilities Act (ADA) and the South Carolina
White Cane law. It had an article about a blind person who had
turned to the NFB to secure the right to travel on a cruise
ship just like any other passenger.
Mr. Anderson had faxed these papers on to the hotel's
lawyers and then, at the lawyers' suggestion, he faxed them to
the hotel's owner, who was in France at the time.
At that point, I did some quick mental calculations of
the time zones and guessed that the owner was receiving the
fax sometime in the wee hours of the morning. Poor man!
Mr. Anderson informed me that the word of the owner was
clear, "Nicolas is to go to the water park, just like all the
other kids."
We left the office with a handshake for Mr. Anderson and
an excited whoop and holler from Nicolas.
The next morning, I watched Nicolas march to the hotel
van with the rest of the children, and I smiled to see Mr.
Anderson watching, too. That day I finally got to attend a
full day of the conference I had come to attend and found it
worthwhile.
When the afternoon drew to an end, I waited with camera
in hand as the van arrived. Mr. Anderson waited, also. He
looked nervous and anxious. He had paced back and forth,
watching out the windows for the van's arrival. I wanted to
assure him that everything would be fine, but before I could
think of what I wanted to say the van pulled up in front of
the doors. Sunburned pink and smiling from ear to ear, Nicolas
stepped out of the van in the middle of a crowd of happy
children.
Everything had gone smoothly. Nicolas gave Mr. Anderson
(who now appeared a lot more relaxed) a big hug and promised
to come back to Sandy the Seagull Club the following summer.
Mr. Anderson agreed; and you know, he looked as though he
meant it!
All year Nicolas has received letters from Sandy the
Seagull reminding him of his wonderful time at Myrtle Beach.
I have just received notice of this summer's conference. If
the budget holds out I believe I will go.
Like all parents I have many goals for Nicolas. I hope he
will learn from situations like this, that he can defend his
right to equality in a respectful and firm way. I know he is
well aware of the NFB's commitment to equality, not only as an
ideal, but as an individual's right.
This lesson, learned in childhood, of the need for strong
laws--like the South Carolina White Cane law, the ADA, and the
power of the NFB and its commitment to the goals of equality
for all blind people (including children) have made a big
impact on Nicolas.
As we walked back to our room that day to pack our things
can you imagine what Nicolas was singing as he skipped ahead
of me? The chorus to the "Battle Song of the NFB"--"Glory,
Glory, Federation, our cause goes marching on!"
Reprinted below are the fax letter, the article, and the
four pertinent sections of the South Carolina White Cane
legislation:
Date: August 14, 1996
Fax To: Hugh Anderson, Manager
Sand Dunes Hotel, Myrtle Beach
Fax #: (803)447-6009
Fax From: David Houck, Executive Director
It has come to my attention through our National Office
that a guest of your hotel, Keri Stockton, is having
difficulty regarding her son Nicolas, who is blind, taking
part in a water park field trip scheduled for Friday through
your day care services. It is also my understanding that in
order for Nicolas to go on the trip that he must be
accompanied by a private aide hired by his mother or that his
mother must sign a waiver of liability.
Under the statutes of the 1972 SC Model White Cane Law,
a blind individual must be treated as any able-bodied person
would be treated. Therefore, unless all the parents are
required to sign such a waiver of liability or hire a
professional assistant at their own expense, then neither
should Nicolas' mother, Keri, be required to either. Please
reference the enclosed White Cane Law which was a twenty year
forerunner to the federal Americans with Disabilities Act
(ADA). Federal law follows suit with the White Cane Law in
this regard.
I would advise strongly that the child be able to
participate with the other children in the field trip to the
water park. It is also my understanding that Nicolas is
familiar with water parks which may not be the case for all
the children who are going, blind or sighted.
As a blind person I have attended several camps for blind
children. Operated wholly by blind counselors, there is not
much we have not done at these camps with blind children
including swimming, hiking, field trips, etc. I can attest to
the fact that just because a child is blind does not
disqualify him or her from full participation in most any
activity. I feel that way about water parks as well.
Thank you for your attention to this matter. I hope that
both Keri Stockton and her son, Nicolas, will enjoy their stay
at the Sand Dunes Hotel and will choose to come again often.
(6 pages to follow.)
cc: Barbara Cheadle, President, National Organization of
Parents of Blind Children, National Federation of the
Blind, Baltimore, MD
Keri Stockton
VICTORY IN THE CARNIVAL CRUISE LINES LITIGATION
The Palmetto Blind, February, 1990
In February, 1989, the Federation sponsored litigation
against Carnival Cruise Lines on behalf of Joe Urbanek of
Walterboro. In order for Mr. Urbanek to take the cruise,
Carnival Cruise Lines required that a special release be
executed by Mr. Urbanek which would have relieved Carnival
Cruise Lines of any and all liability arising out of Mr.
Urbanek's cruise. Mr. Urbanek's blindness was the sole cause
of Carnival Cruise Lines insisting upon the special release
being executed. Mr. Urbanek appropriately resisted and sought
the assistance of the National Federation of the Blind of
South Carolina and the National Federation of the Blind to
fight the discriminatory policies of Carnival Cruise Lines.
Upon the filing of the litigation Carnival Cruise Lines
took the position that they were not doing business in South
Carolina and filed for a dismissal of the litigation on the
grounds that South Carolina lacked jurisdiction. The court
held otherwise. Carnival Cruise Lines appealed the decision to
the Supreme Court of South Carolina. Meanwhile, it obviously
became increasingly clear to Carnival Cruise Lines that their
discriminatory policies against the blind and the handicapped
would not be upheld by the courts. Thus, the strong position
held by the Federation, coupled with the fears of Carnival
Cruise Lines that they would not win this litigation,
ultimately resulted in their abandoning their policy of
requiring blind persons to sign any special release. On
December 21, 1989, a Consent Decree filed in the Richland
County Court of Common Pleas was executed, ending the Carnival
Cruise Lines policy of discriminating against the blind.
Mr. Clifford O. Koon. Jr., member of the law firm,
Rogers, Thomas, Cleveland, Koon, Waters, and Tally, which
represents the NFB of South Carolina, writes in part as
follows: "I am pleased that this matter was concluded
favorably. I take particular pride in the language on page 4
which gives any citizen of the State of South Carolina the
right to enforce this decree should Carnival fail to abide by
it. This was a provision which we insisted be part of the
settlement."
Mr. Koon also writes, "I am happy to tell you that we
have settled the case with Carnival ... Carnival has agreed to
change its discriminatory policies and to place handicapped
persons on an equal plane with others. We are very happy with
the victory in this case. We will, however, be monitoring
Carnival Cruise Lines very closely to ensure that they give
more than lip service to their policy change."
It is noteworthy that the Consent Order cites the Bill of
Rights for the Blind Law sponsored by the National Federation
of the Blind of South Carolina in the early 1970s, in reaching
this settlement. This particular law is also referred to as
the Model White Cane Law. In Section I of the Consent Order it
states, "that this action was commenced by the plaintiff,
Urbanek, on February 10, 1989, alleging that the defendant,
Carnival, had engaged in certain discriminatory practices
against Urbanek, a blind citizen of South Carolina, and other
persons similarly situated, by requiring them to sign a
special release form as a condition of passage on its cruise
ships, in violation of South Carolina's Bill of Rights for
Handicapped Persons Section 43-33-510 et seq. South Carolina's
Code of Laws for 1976."
Once again, it is clear that legislation sponsored by the
National Federation of the Blind of South Carolina, and which
became law, is very important as it protects blind citizens
against discriminatory practices based solely on blindness. It
should also be apparent to anyone that the Federation will
enforce the law through court action, if necessary, in the
interest of blind persons being treated fairly and on a
nondiscriminatory basis.
Statutes at Large of South Carolina,
General and Permanent Laws--1972
(R1646, H3071) No. 1425
An Act Granting Rights To Blind Persons As To Access And
Enjoyment of Public Buildings, Conveyances, Housing
Facilities, Use of Guide Dogs; And To Provide For White Cane
Safety Day.
Be it enacted by the General Assembly of the State of
South Carolina:
SECTION 1. Policy of State.--It is the policy of this
State to encourage and enable the blind, the visually
handicapped, and the otherwise physically disabled to
participate fully in the social and economic life of the State
and to engage in remunerative employment.
SECTION 2. Rights of blind and other handicapped person.-
-
(a) The blind, the visually handicapped, and the
otherwise physically disabled have the same right as the
able-bodied to the full and free use of the streets, highways,
sidewalks, walkways, public facilities, and other public
places;
(b) The blind, the visually handicapped, and the
otherwise physically disabled are entitled to full and equal
accommodations, advantages, facilities, and privileges of all
common carriers, airplanes, motor vehicles, railroad trains,
motor buses, street cars, boats or any other public
conveyances or modes of transportation, hotels, lodging
places, places of public accommodation, amusement or resort,
and other places to which the general public is invited,
subject only to the conditions and limitation established by
law and applicable alike to all persons;
(c) [This part is about guide dogs]
SECTION 3. Duties of motorists.--...
SECTION 4. Certain action unlawful.--Any person or the
agent of any person who denies or interferes with admittance
to or enjoyment of the public facilities enumerated in Section
2 or otherwise interferes with the rights of a totally or
partially blind or otherwise disabled person under Section 2
shall be guilty of a misdemeanor.
SECTION 5. White Cane Safety Day.--...
SECTION 6. Employment in State service.--...
SECTION 7. Housing accommodations_no discriminations.--
...
SECTION 8. Time effective.--...
The Littlest Lobbyist
by Judy Jobes
Reprinted from the January, 1996, Braille Monitor, the
monthly magazine of the National Federation of the Blind.
From Barbara Pierce, the Braille Monitor Editor: One way
and another Federationists spend a good bit of time working to
educate elected officials about the actual problems facing
blind citizens and the legislative and regulatory responses
that would truly solve them. We avoid the word "lobbying" to
describe this activity because we are citizens speaking about
the issues that affect our own lives and because we have no
funds at our disposal to use in persuading officials to vote
our way as do the representatives of big labor and big
business. So it was with some disquiet that I first read the
title of the following story.
In point of fact, the members of the National Federation
of the Blind of Pennsylvania who went to speak with Governor
Ridge about the importance of enacting Braille literacy
legislation were not advocating a measure that would assist
them. Some members of the group were already good Braille
readers; some had been denied Braille as children and as a
result would never become rapid Braille readers or benefit
from improved Braille instruction in the schools; but they all
knew something that the Governor did not: blind children must
be taught Braille early by teachers who know the code well and
believe in its effectiveness if they are to have a chance to
become competent, literate adults. The group of Federationists
had also brought their secret weapon--Laura Wolk.
I toyed with the idea of changing the title of Judy
Jobes's story of the group's meeting with the Governor, but
somehow "The Eight-Year-Old Educator" did not achieve the ring
of Judy's title. So meet the littlest lobbyist from Allentown,
Pennsylvania, and her Federation friends:
The heavy wooden doors opened, and the Governor's
secretary ushered us into his office. The Governor received us
warmly. Governor Ridge had served as my Congressman and had
worked with us on many issues. I introduced him to my
colleagues in turn, leaving eight-year-old Laura until last.
Governor Ridge directed us to a table at the far end of the
room. He told Laura he had been waiting to meet her and asked
her to sit next to him at the head of the table.
I made my presentation. Only 9 percent of blind children
are taught to read Braille today, and the illiteracy rate
among all blind children is 40 percent. To date twenty-seven
states have enacted Braille bills, a figure which illustrates
the need to legislate a solution rather than to evoke
ineffective regulations and standards.
Then it was Laura's turn. On cue she read the letter she
had written to the Governor. Her small fingers easily and
quickly identified the Braille dot formations, enabling her to
read proficiently beyond her years. Her letter read like this:
"My name is Laura Wolk. I am eight years old and going
into the third grade. I have been reading Braille since I was
three years old. My teacher's name is Mrs. Betz.
Last spring I made my First Communion. I Brailled
Scripture and read it from the altar.
The most difficult thing about Braille is getting enough
books. I quickly read a book and have to wait a very long time
to get another one. I need more books."
The Governor watched Laura intently. He was in awe as
Laura read. He came to understand firsthand the value of
Braille. Laura concluded her letter by saying: "Governor, my
wish is that all children who do not see well could learn to
read like me."
We continued with our presentations. The Governor leaned
over and said something to Laura. She whispered, "Yes."
Excusing himself from us for a moment, the Governor walked to
his desk. He opened a drawer, took something from it, returned
to the table, and asked if anyone would like to join him and
Laura in sharing some jelly beans. We all smiled, and the bag
went around the table as each of us helped ourselves to a few
jelly beans.
The meeting proceeded as Ted Young, President of the
National Federation of the Blind of Pennsylvania, and the
Governor continued to discuss issues relevant to blind
Pennsylvanians. As the meeting concluded, the Governor again
engaged Laura in conversation, asking her about piano lessons
and proclaiming that he might just take in one of her
recitals.
The Governor concluded our meeting by explaining to Laura
that a lobbyist is someone who comes to see people like him,
who are elected, and discuss issues which are important to
them. He said that he had never had a lobbyist come to see him
who had been as young or as effective. We posed for pictures,
and our meeting ended.
Regrouping in the hall, we shared our impressions of the
Governor's reactions to our issues. Laura opened her small
hand, proudly displaying two, by now rather sticky, jelly
beans and announced that she was keeping those jelly beans;
after all the Governor had given them to her. Accepting gifts
from public officials is not usually the way things are done
in lobbying circles. For the sake of Pennsylvania's blind
students, however, let's hope it was effective.
Note: Among the group that visited the Governor was
Laura's father, Michael Wolk. Mike is the president of the NFB
of Pennsylvania's Parents of Blind Children organization. Mike
is one of the many parent leaders around the country who, like
Julie Hunter (see lead article), have chosen to tap into the
power of the NFB.
Ohio Mom Goes To D.C. With The NFB
Editor's Note: Crystal McClain is a member of the Ohio
Parents Division and a hard-working Federationist. She has
participated in the Washington Seminar for the past three
years. After every seminar she would contact her local
newspaper and tell the editor about her trip to Washington and
about the legislative agenda of the National Federation of the
Blind. Last year, in 1996, the paper decided to print a story
about Crystal's trip to Washington and her family. Here's the
story that appeared first in her local paper and later as a
reprint in the Summer, 1996, issue of the Buckeye Bulletin,
the Newsletter of the NFB of Ohio.
Local Mother Works to Provide
Opportunities for Blind Daughter
by Martha O'Connor
A mother's desire to provide the best for her children
has been a driving force behind Crystal McClain.
Twin daughters were born September 19, 1990, three months
prematurely, to Mrs. McClain and her husband, Mark, of
Bellefontaine. The girls joined another sister, Brianne, who
was 8 years old at the time.
Macy weighed 1 pound, 13 ounces at birth, and Madison was
2 pounds, 2 ounces. The twins were hospitalized about three
months at Children's Hospital in Dayton following their birth
at Mary Rutan Hospital.
A complication developed when Macy was taken off oxygen
after two months. She was discovered to have detached retinas
that left her blind. Her twin sister suffered no
complications.
Macy has had several surgeries to correct the problem but
to no avail.
Mr. and Mrs. McClain spent a lot of time in surgery
waiting rooms to ponder what was to come. On one occasion Mrs.
McClain came across a magazine published by the National
Federation of the Blind. It piqued her interest in finding out
more about blindness and led her to become involved in the
Ohio Division of the NFB.
"Even though I had never met a blind person, I had come
to the conclusion that blind people were incapable of a lot of
everyday things and unable to be independent," she said. "The
NFB showed me firsthand how wrong I was."
She has participated in national conferences and often is
called upon to lobby Congress for legislation that would
benefit her daughter and all blind people.
Mrs. McClain said her association with the organization
has enabled her to meet other parents of blind children. She
has seen how blind people have succeeded in life as teachers,
lawyers, and social workers and in many other professional
careers.
She said she has come to know what to expect from Macy
and has high expectations for her. She has devoted much effort
in seeing that Macy has every opportunity to achieve them.
Assistance from the Early Intervention Program in Logan
County came from the time Macy was slightly more than four
months old. The agency provided many specialized services for
Macy. A Braille teacher comes once a month to work with Macy,
as does a teacher who instructs her in how to use a cane. An
occupational therapist has also consulted with the family.
"The use of a cane by such a young child is something the
NFB encourages, said Mrs. McClain. "We played games with Macy
to get her to use it to find things," she said. "The cane is
second nature to her now."
One of the hardest things for Macy to learn was to feed
herself at the table, according to her mother. "Most children
learn this by imitating others." Macy was taught to move her
hand and fork through motion and verbal explanations of where
the food was on the plate.
"We just have to figure out a way to teach Macy how to do
things," said the determined mother, adding "There isn't
anything we haven't found a way to do."
Since they are twins, Mrs. McClain prefers to dress the
girls alike, but she also encourages their independence.
Madison has been taught not to pick up after Macy because Macy
needs to learn to do things for herself. They do play well
together and support each other, according to their mother.
The girls have attended the preschool program at the
Discovery Center for the past two years. They are in separate
classes for most activities but are together for things such
as physical education.
The structure of programs allows for children with
special needs to interact with other children. According to
Susan Holycross, program director, "The children learn from
each other, and what they have learned about their differences
they in turn pass that knowledge on to their parents."
Kelly McGowan, Macy's teacher, says that Macy's favorite
things are tactile. She likes sensory things, those she can
feel. Activities like playing in the sandbox or with the
class's pet rabbit and finger painting seem to stimulate her,
according to Ms. McGowan. The classroom is user-friendly for
Macy, with lots of objects for touching and even labels in
Braille so she can find things.
Macy and Madison attend the Discovery Center from 9 a.m.
to 3:30 p.m. Ms. Holycross explained that the all-day-unit is
designed to help prepare students for kindergarten.
Special therapists make scheduled visits throughout the
week. One of them is an orientation and mobility specialist,
who works with Macy to facilitate her learning how to get
around.
Ms. Holycross notes that the Discovery Center is working
in conjunction with Mrs. McClain and Bellefontaine City
Schools to prepare the twins for enrollment at Pine Avenue
School next year.
Macy visits Pine Avenue once a week to acclimate herself
in the building. In turn, staff members from Pine Avenue come
to the Discovery Center to observe and learn from Macy and her
teachers.
Ms. Holycross said that current plans are for Macy to
have a full-time aide at Pine Avenue. She anticipates this
assistance for about two years. Because of Macy's ability to
adapt so readily and her quickness in learning, it is believed
that she will be able to get along without full-time
assistance by then.
In the meantime Mrs. McClain continues to support
legislative priorities of blind Americans. A trip in January
to Washington, D.C., took her to the offices of Ohio's
Senators and Congressmen to urge support for three specific
issues.
The first is for a pending Senate bill that would raise
the earning limits for senior citizens to $30,000 beginning in
2002, while limiting the earnings limit for blind people to
$11,520. A concurrent House Resolution would re-establish the
link between senior citizens and blind earning powers. She is
urging the link be re-established so blind people could work
to increase their earnings like senior citizens without being
penalized. [Editor's Note: This is still a legislative issue
the NFB is pursuing.]
The second issue involves the Copyright Act currently
under review. The NFB is requesting the removal of a proposed
1-year time limit for reproducing written materials in
Braille, thus allowing blind children immediate access to
Braille books. Current regulations result in a month delay in
books being transcribed into Braille. [Editor's Note: Please
see the article, "New Copyright Law Big Breakthrough for the
Blind" in this issue.]
The final item under consideration is a matter of policy,
not legislation. The NFB is urging that the federal
Individuals with Disabilities Education Act (IDEA) include
wording that stipulates teaching Braille to blind children.
Ohio and other states already include the wording in their
Braille bills. [Editor's Note: This has just been
accomplished. Please see the announcment at the end of this
issue.]
Mrs. McClain truly believes that with the proper support
blindness need not be a tragedy but a mere nuisance.
"Blind adults can and do hold jobs, graduate from
college, have homes and families. I urge people not to hold on
to your misconceptions about blindness but to instead wait and
see what Macy is capable of."
New Copyright Law Big Breakthrough For The Blind
Ever since books began to be recorded or Brailled for the
blind, copyright laws have been a problem. Copyright clearance
had to be sought on a book-by-book and item-by-item basis for
anything to be reproduced for the blind. This was an expensive
and time-consuming procedure. Sometimes the publisher had to
be asked for clearance, sometimes the author, and sometimes
copyright power was jointly shared. Books that contained
stories or chapters by different authors complicated and
delayed the process so much that often such books were never
recorded or Brailled. In some instances, even after delays of
months and an outlay of a great deal of money and time,
permission was denied altogether.
The development of digital formats and the electronic
production and distribution of reading matter over the
Internet added a new dimension to an already complicated and
cumbersome situation.
Shortly after taking office, the Clinton Administration
began to explore changes in the copyright law as part of
broader considerations involving the Internet. Unfortunately
the legislative bill which was introduced provided for
copyright changes that would have made the situation even
worse for the blind. However, feeling that this climate of
investigation and reexamination of the copyright law offered
not only a threat but also an opportunity, the NFB and others
in the blindness field took action.
On January 25, 1996, the NFB hosted a meeting with the
president and top officials of the Association of American
Publishers (AAP), representatives from the National Library
Service for the Blind and Physically Handicapped of the
Library of Congress (NLS), and, of course, representatives
from the NFB to discuss copyright clearance for reading matter
for the blind. After many hours of discussion and negotiation
complete agreement was reached on language to propose as an
amendment to the copyright bill then before Congress. The
proposal was simple: No longer would copyright clearance be
required for nondramatic literary works reproduced by certain
entities in specialized formats for the blind and other
persons with disabilities.
On February 8, 1996, several major agencies for the blind
testified at a Congressional hearing in support of the
proposal which came out of this meeting between AAP, NLS, and
the NFB. Dr. Tuck Tinsley, head of the American Printing House
for the Blind, was there to testify. He said in part:
"The substitute language for the new section 108A
proposed by the National Federation of the Blind, the
Association of American Publishers, and the Library of
Congress will greatly assist with the provision of educational
materials to blind students at the same time the materials are
available to their sighted peers. This amendment will provide
long-overdue enrichment to the lives of blind students. It is
time to put an end to the unintended effect that copyright has
of censoring blind students' access to current ideas,
information, and educational resources. On behalf of all of
the legally blind student population of our country, the
American Printing House for the Blind salutes the Association
of American Publishers for going to the National Federation of
the Blind and working toward language for section 108A which
is beneficial to all."
To make a long story a little shorter, Congress passed
the copyright amendments and the amended bill was eventually
signed into law by President Clinton on September 16, 1996.
This change in the Copyright Act has great potential for
increasing the number of books that are available to the
blind. Currently, of the 40,000 books that are published
annually, only about 5 percent are made available to the
blind. The time and money that is saved now that copyright
permission is no longer required can be directed toward
getting more books reproduced in a timely fashion.
However, even a law this simple needs some explanation.
The following article, reprinted from the February, 1997,
Braille Monitor, provides an explanation and answers to common
questions about the law which have been raised with the NFB.
The author, James Gashel, is the NFB's Director of
Governmental Affairs.
SPECIAL NOTICES FOR NEW COPYRIGHT LAW
by James Gashel
As Braille Monitor readers are well aware, the National
Federation of the Blind played a pivotal role in securing
passage of amendments to the Copyright Act during the second
session of the 104th Congress. The changes which are now in
the law resulted from negotiations between Federation leaders
and responsible officials of the Association of American
Publishers.
The amendments to the Copyright Act were included in a
bill to fund operations of the Congress for fiscal year 1997.
The bill is known as the Legislative Branch Appropriations
Act. Although the primary purpose of the bill is to approve
spending for operating the House of Representatives and the
Senate through September 30, 1997, funds are also included for
the Library of Congress and other activities that fall within
the legislative branch.
As the Constitution specifies, all bills to appropriate
money must originate in the House of Representatives and then
be considered by the Senate. In the instance of the
Legislative Branch Appropriations Bill, the House did not
include the copyright amendments in its original version, but
the Senate added the provisions as section 316. The House then
agreed to this change. Unlike the spending provisions of the
bill, which generally expire at the end of September, 1997,
the copyright amendments are permanent.
In the months since enactment of the new law many
questions have come to the Federation about what to do to
comply. In the first place, there is a common misconception
that anyone is now permitted to reproduce any printed material
for blind people. Technically and actually, this is not quite
so. Only authorized entities are now allowed to convert
printed matter into Braille and other formats without
permission.
Authorized entities include both public and private
nonprofit agencies or organizations such as schools,
libraries, training programs, book transcribing groups, and
the like. With a definition like this, any individual who
wants to have material reproduced in Braille or another
special format ought to be able to find a qualified group to
do the work or to sponsor having it done.
Another question has to do with the effective date of the
new provisions. The law which includes the copyright amendment
was signed by President Clinton on September 16, 1996. The
changes to the Copyright Act were immediately effective from
that date forward. Some people have assumed that material
which was published prior to September 16, 1996, cannot be
reproduced without permission. This is not the case. The
exemption for reproduction and distribution of material in
specialized formats applies to any copyrighted work, no matter
when the work was published and copyrighted in the United
States. The exemption would not apply, of course, if the
reproduction or distribution of the work in a specialized
format occurred prior to September 16, 1996; but this is a
different matter altogether. For all practical purposes, any
nondramatic literary work that exists (no matter when
published) may now be reproduced.
So the question then comes: what about a copyright notice
in view of the fact that permission to reproduce printed
matter is no longer required? The answer is found in the law
itself. The requirements_there are only two_are quite
clear-cut:
(1) All works which are reproduced or distributed in a
specialized format, including Braille, audio, or digital
reproductions, must contain a statement that "Further
reproduction or distribution in a format other than a
specialized format is prohibited." According to the Library of
Congress, this notice must appear both in print (for example,
on the label of a recorded disk or cassette) and in the audio,
Braille, or digital text itself.
(2) Every reproduction must provide identifying copyright
information by saying: "Copyright, (holder's name), (date)."
It is just that simple. The permission language which used to
appear is no longer appropriate because permission is not
required, to which one might observe that most laws result in
complicating our lives even when they do so in the name of
providing us with opportunities. Here, however, is an example
of a law which has had exactly the opposite effect. The
required statements are clear, short, and to the point. That's
the way it is, and there is really nothing else to say.
Canes In Congress:
The 1997 Washington Seminar
By now most members of Congress know that in the first
week of February the halls of Congress will echo with the
sound of hundreds of tapping white canes. This is the week
that blind members of the National Federation of the Blind
make their way to D.C. to talk to their Senators and
Representatives about the year's legislative priorities for
blind Americans. This event, called the Washington Seminar, is
becoming bigger each year. About 500 people representing 48
states and Puerto Rico attended the 1997 seminar.
NFB committees and divisions take advantage of the large
crowd and plan special meetings and conferences on the weekend
preceding the congressional visits. This year blind college
students, lawyers, business people, and parents of blind
children sponsored mini-seminars at this event. By far the
largest of those meetings was the student seminar. Some 200
blind college students attended the day-long seminar and
evening banquet sponsored by the National Association of Blind
Students.
Parents of blind children also come with their NFB
delegations and participate fully in the visits and meetings.
Some bring their children. Real-life participation is a great
way for kids to learn more about our government and the
democratic process.
Because of D.C.'s proximity to Baltimore, the
headquarters of the National Federation of the Blind,
arrangements are made for tours of the National Center for the
Blind. Since the International Braille and Technology Center
for the Blind is at the same location, it, too, is on the
tour. This year, over 100 members took advantage of this
wonderful opportunity to see and learn more about how the
National Office of the National Federation of the Blind
operates.
Although the mini-seminars and tours are great, the real
focus of the trip is, of course, the congressional visits.
Reprinted below are the fact sheets we distributed to Congress
which describe the three legislative priorities for 1997. This
year we have already been successful in achieving one of our
goals: the addition of wording about Braille literacy to the
re-authorization of the Individuals with Disabilities
Education Act (IDEA) (see the announcement at the end of this
issue.)
LEGISLATIVE AGENDA 1997
From: Members of the National Federation of the Blind
To: Members of the 105th Congress
Re: Legislative Priorities of Blind Americans
Public policies and laws affecting blind people have a
profound impact on our entire society. Most people know
someone who is blind. It may be a friend, a family member, or
a co-worker on the job. The blind population in the U. S. is
estimated to exceed 700,000. Fifty thousand Americans become
blind each year. By themselves, these numbers may not seem
large, but the social and economic consequences of blindness
directly touch the lives of millions. In the form of its
social consequences and to some extent its economic
consequences, blindness affects virtually everyone.
Public policies and laws that result from misconceptions
about blindness or lack of information are often more limiting
than the loss of eyesight itself. This is why we have formed
the National Federation of the Blind. The Federation's leaders
and the vast majority of the members are blind, but membership
is open to anyone who wants to join in the effort we are
making to win understanding and equality in society.
Our priorities for the first session of the 105th
Congress reflect an urgent need for action in three specific
areas of vital importance to the blind this year.
(1) Congress should restore work incentive equity for
blind individuals by re-enacting the identical earnings
exemption threshold for blind and senior citizen beneficiaries
under title II of the Social Security Act. This proposal seeks
to reduce (or eliminate altogether) the work disincentive of
the Social Security earnings limit as it now affects blind
beneficiaries. In spite of a law passed in 1977 creating a
logical and identical earnings exemption threshold for blind
people and retirees, beneficiaries who are blind were singled
out for exclusion from a series of seven specified annual
increases in the exempt amount mandated under a new law solely
for seniors. This means that a lower earnings limit for the
blind--$12,000 as compared to $13,500--is now in effect. By
2002, when the exemption for seniors becomes $30,000, the
lower limit created by Congress for the blind in 1996 will be
less than half the amount allowed for seniors unless the law
is changed.
People of working age who are blind must not be forgotten
now that the earnings exemption for retirees has been raised.
Just as with hundreds of thousands of seniors, their positive
response to the higher amounts of earnings allowed will bring
additional revenues into the Social Security trust funds. The
chance to work, earn, and pay taxes is a constructive and
valid goal for senior citizens and blind Americans alike. This
is why the statutory linkage of the exempt earnings amounts
which existed under the law for almost twenty years should be
restored. For more details and an explanation of the need for
this legislation, see the fact sheet entitled "WINNING THE
CHANCE TO EARN AND PAY TAXES: HOW THE BLIND PERSON'S EARNINGS
LIMIT IN THE SOCIAL SECURITY ACT MUST BE CHANGED."
(2) Congress should amend the Individuals with
Disabilities Education Act (IDEA) to include provisions for
strengthening programs of Braille literacy instruction. This
can be done by enacting Braille literacy for blind persons
provisions as part of the Individuals with Disabilities
Education Act (IDEA). Goal Five of the National Education
Goals declares that by the year 2000, "Every adult American
will be literate..." For blind people this means having the
ability to read and write in Braille at a level of proficiency
which makes performance on equal terms possible. Without
legislative change, today's blind children will not be able to
meet this national goal.
As many as 34 percent of the blind students enrolled in
elementary and secondary schools in the U.S. during the last
school year were classified as "non-readers." Fewer than 10
percent read Braille. Current federal and state laws require
that an appropriate educational opportunity must be provided
to children with disabilities. Each such child is to have an
individually planned program of instruction to meet identified
needs, but growing illiteracy for blind children has been the
result. Remedial federal legislation, similar to laws now
enacted in 28 states, can help to reverse this trend. For more
details and an explanation of the need for this legislation,
see the fact sheet entitled "BRAILLE LITERACY AND THE
INDIVIDUALS WITH DISABILITIES EDUCATION ACT."
(3) Congress should enact legislation this year to
re-authorize the existing federal/state program of vocational
rehabilitation. This program, as currently authorized under
Title I of the Rehabilitation Act of 1973, is now in its final
year before action must be taken to continue grants to states
for serving persons with disabilities, including people who
are blind. During the 104th Congress, vocational
rehabilitation was among the programs first included but later
removed from a proposed job training, education, and
employment system consolidation bill. Nonetheless, with the
program's re-authorization due for consideration this year,
the possibility of consolidation with other programs has been
discussed and could be proposed again.
Vocational rehabilitation has been recognized as a
specific responsibility to be shared by the federal government
and the states for 77 years. The mixture of this program
(intended to address essential and complex disability-related
needs) with generic job training, education, and employment
programs for the general population is a fundamentally-flawed
concept. For someone who becomes blind in mid-career,
unemployment is only one of many consequences. By comparison,
however, the need for special help to deal with blindness is
by far the most profound initial problem. This is why
vocational rehabilitation services should continue to receive
dedicated federal funding to support a targeted and
identifiable service delivery system. For more details and an
explanation of the need for re-authorization see the fact
sheet entitled "BLINDNESS, REHABILITATION, AND THE NEED FOR
SPECIALIZED PROGRAMS."
People who are blind are asking for your help in securing
positive action by Congress in the areas outlined here.
Legislative proposals will be offered to achieve each of our
specific objectives. Many priorities confront this session of
Congress, and the needs of the nation's blind are among them.
By acting on these priorities in partnership with the National
Federation of the Blind, each member of Congress can help
build better lives for the blind both today and in the years
ahead.
Michigan Parent Nominates Teacher Of The Visually Impaired
For Award
by Dawn Neddo
Editor's Note: Dawn Neddo is the hard-working president of the
Michigan NFB Parents of Blind Children Division. Readers may
recognize her name. She and the Michigan Parents Division have
been featured more than once in Future Reflections. Through
knowledge gained from the NFB, Dawn began early, while Kyle
was still receiving preschool services, to advocate for an
appropriate education program. With the help of NFB volunteer
advocates, she finally got a good IEP. Then she realized
belatedly (as so many of us do) that even the best IEP doesn't
mean much without a teacher who knows Braille thoroughly,
knows how to teach (especially knows how to teach reading),
and has a firm conviction that her most important job as a
teacher of the blind is to work herself out of a job.
While waiting, hoping, and wrangling with the school
district for such a teacher, Dawn supplemented her son's
Braille education through a monthly volunteer tutoring program
run by the NFB of Michigan and the Parents Division. Then, in
the middle of Kyle's first grade year, a new Braille teacher
came into Kyle's life.
Recently Dawn sent me some material describing this
teacher. Dawn doesn't explain how it happened--through simple
good fortune or as a consequence of her persistence--but the
school finally found a Braille teacher who could do the job
right. In fact, the teacher is doing her job so well that Dawn
felt compelled to nominate her for local teacher of the year.
Here is the note she wrote to me followed by a copy of her
letter of nomination:
April 4, 1997
Barbara Cheadle, Editor,
Future Reflections
I am writing to inform you of a special person in my
son's life who has been an inspiration to me and changed my
son's education dramatically. She is his Braille teacher (VI
teacher consultant), Mrs. Julie Unatin. She is with Oakland
Schools. My son is in the Walled Lake School District.
I am sending you a copy of the nomination letter I sent
to nominate her for teacher of the year. I believe she
deserves to be recognized as a terrific teacher that truly
cares about her students and gives over 110 percent. She did
not get teacher of the year for Walled Lake because she is not
a full-time Walled Lake employee, but I hope you will
acknowledge her dedication in some way.
Thank you,
Dawn L. Neddo
Commerce Township, Michigan
Letter of Nomination For: Julie Unatin
For: 1997 Walled Lake Teacher Of The Year
I am nominating Julie Unatin for Walled Lake Teacher Of
The Year. Julie Unatin is a teacher of the visually impaired
who works with my son, Kyle Neddo, who is totally blind.
Kyle is an inclusion student in Mrs. G. Chapp's third
grade class at Glengary Elementary in the Walled Lake School
system. She has also taught several other blind students in
Walled Lake and around Oakland County.
1. Julie Unatin is a special teacher. She has chosen to
teach in the visually impaired field which in itself is a
rewarding, unselfish, and compassionate career. But Julie goes
beyond her teaching obligations. Her commitment to her
students and their parents is genuine, with total devotion to
giving her students whatever instruction is needed to compete
with their sighted peers. Her goal for herself is to work
herself out of her students educational lives. By this I mean
she believes in her blind students becoming independent
citizens which, in a fast-paced, self-centered society, is not
the vision most people have for the blind.
She never pre-judges her students, and she encourages
family involvement in a child's educational plan. If something
isn't working she doesn't give up. She is determined that the
student can reach his/her greatest potential, and keeps her
high expectations through even the most difficult times. She
not only has the task of teaching the student Braille and
other blindness skills, she must educate the staff and the
sighted students on blindness issues. Having a blind student
in an inclusion school is difficult because of the many
negative attitudes about inclusion itself, not to mention the
negative stereotypes about blindness. But throughout many
frustrating situations she has maintained her beliefs,
optimistic attitude, patience, and understanding. The extra
time she spends doing Braille lessons over holidays, weekends,
and summer vacation adds up to many hours of work that she is
not required to do but, because of her devotion and faith in
her students, she does it without fanfare or extra monetary
gain.
My children have had many wonderful teachers in the
Walled Lake School system throughout the past twenty years (my
two oldest daughters graduated from Walled Lake Central--one
is now an attorney and the other an elementary teacher). But
in all this time I have never observed the kind of dedication
that Julie Unatin displays for her students.
2. Julie Unatin is an honest person and works very well
with all the people she encounters. She has to work with not
only Oakland Schools, but Walled Lake Schools as well. She
must communicate with staff at all levels from administration
to para-professionals. Her dealings with principals, general
education teachers, specialty teachers (music, art, and
physical education), as well as the family all filters down
for the student's best interest.
One of the most challenging relationships for a teacher
of the visually impaired can be working with parents. I have
found Julie to be open-minded in her evaluations of situations
and honest. If there is ever a disagreement or concern she is
willing to discuss it and work together to decide what our
options are. She is a pleasant, fun person to work with and my
son Kyle respects and enjoys learning from her. She is eager
to educate staff and students about blindness. I feel my son
and the blind community are lucky to have her as an advocate.
3. Julie Unatin has been the determining factor in my son
learning to read and write. Julie came to Glengary in January
of Kyle's first grade year. My son was not reading or writing,
nor did he know any numbers or how to write a math problem.
His Braille instruction at that point had been negative and
slow. Because the method and teaching of Braille was not
adapted to his individual learning style or interest, he was
frustrated and didn't want to learn to read.
Allen Harris, president of the National Federation of the
Blind of Michigan (he is totally blind himself) was familiar
with my son's problem with learning to read. Mr. Harris made
himself available to Julie Unatin for consultation and
tutoring of Kyle. Mrs. Unatin's willingness to change the
"normal" ideas about teaching Braille and devise a Braille
reading curriculum with Mr. Harris was unprecedented in my
experience.
The result was that Kyle went into second grade knowing
his letters and numbers, thus giving him a solid start to
reading. By January of second grade he had come up to a lower
second grade reading level. He was also learning math and able
to write math problems on his Braille writer and abacus. He
was finally working along with his sighted peers. The team
work of that group of teachers (Lori Burke, Linda Harrold, and
Julie Unatin) allowed Kyle to work his way up to grade level
and go on to third grade.
4. Julie is a member of many groups for teachers of the
visually impaired and participates in conferences for
education of the blind and visually impaired. She is married
and has a preschool age son and a baby on the way. Even though
she is a very active person, she still found time along with
some other teachers of the visually impaired in this area to
organize a goal ball children's program that meets once a
month. (Goal ball is a competitive sport for blind and low
vision children that utilizes an audio soccer-like ball).
I feel Julie Unatin deserves this honor because her
presence and expertise at Glengary and in Walled Lake is truly
an asset to our school district. Without her qualities and
knowledge I do not believe my son would have been successful
as an inclusion student nor would he have been able to keep up
with his sighted peers.
My son has a lot of work and learning ahead of him. It is
not an easy road for him, his parents, or his teacher, but
with Julie Unatin's dedication, ideas, patience, and
determination I feel my son has the chance he deserves.
Thank you Walled Lake Schools for giving inclusion a
chance, and thank you, Mrs. Unatin, for all that you do for
blind children.
Dawn Neddo
RECOGNITION FOR TEACHERS
OF THE VISUALLY IMPAIRED
Has your son or daughter had an exceptional Braille
teacher, orientation and mobility instructor, or other teacher
of the visually impaired? Would you like for him or her to
receive public recognition for the difference he or she is
making in your child's education? Future Reflections will
publish, in any or every issue, Teacher Recognition Letters
from parents of blind children.
The letters should be one to three typewritten pages in
length and include sufficient detail about the teacher and the
circumstances to be of interest and inspiration to our
readers. The Teacher Recognition Letter should be accompanied
by a cover letter with the name and address of the sender, the
teacher's name, the student's name, the name of the school
district, and any other pertinent details. Photographs, color
or black and white (no slides), would be helpful. If you want
the photograph returned, please include a self-addressed
envelope and be prepared to wait up to a year for its return.
Also, if you want multiple copies of the print issue should
your letter be published, please indicate how many you want in
your cover letter. We will send them to you free of charge.
Send cover letter and your Teacher Recognition Letter to:
Future Reflections
1800 Johnson Street
Baltimore, Maryland 21230
New Book Sends Wrong Message To Parents
by Carol Castellano
Reprinted from the February, 1997, issue of the Braille
Monitor, the monthly publication of the National Federation of
the Blind, 1800 Johnson Street, Baltimore, Maryland 21230.
Barbara Pierce, Editor, Braille Monitor:
Early last year I began hearing and reading about a new
book intended to provide a wonderful new resource to parents
of young blind children. The reviews I read, all of which were
written by professionals in the blindness field, were
flattering and enthusiastic. Those invited to contribute
chapters to the text were knowledgeable and well respected,
and several parents had been asked to add their perspective.
As I say, the reviews were positive, but the quotations
included gave me qualms. When I received a review copy of the
book, I passed it along to Carol Castellano, an experienced
and successful parent of a blind daughter and a leader in the
National Organization of Parents of Blind Children, a division
of the National Federation of the Blind. I was interested to
see how a parent of a healthy, happy blind child would react
to all the so-called honest talk about what it is really like
to deal with a son's or daughter's blindness.
Carol called me when she finished reading the book and
asked how much space she had to write her review. I responded
that this was clearly an important book, and good or bad,
Federationists were going to be running into questions about
it and dealing with its impact for years to come. I told her
to report honestly on what she had found and dispense praise
and criticism where she thought they were due. The following
article is the result. Doubtless many parents of young blind
children will read Children with Visual Impairments, so we had
all better be prepared to help them put it into perspective.
Here is Carol Castellano's attempt to do just that:
Children with Visual Impairments: A Parent's Guide, a new
book edited by M. Cay Holbrook and published by Woodbine
House, is intended to give parents of visually impaired babies
and very young children information and guidance on issues
related to visual impairment. Written by sixteen professionals
in the blindness field and three parents, the book contains
much information, promising chapter titles (each chapter is
written by a different author or authors), and a number of
suggestions for working with a visually impaired child. The
question must be asked, however, on the whole, will this book
help or harm blind children and their families?
In my role as President of Parents of Blind Children of
New Jersey, I speak frequently to parents of newly diagnosed
blind children. My experience with these parents is that they
are seeking information, suggestions, and a listening ear; but
above all, they are seeking hope. Often the only hope they
have early on is that their child will have a little eyesight.
What they know about blindness--or what they think they know--
is pretty bleak. They usually know nothing at all about
blindness skills.
I gently tell them about my daughter--that she attends
our neighborhood school and that she has the same books as all
her classmates, but in Braille. I mention that she's a sports
nut and played on our town's T-ball team. I tell them that she
has a cane and uses it to go all over. I might mention that
her grade is working on research skills at the library or that
this morning she went to a rehearsal of her class play.
The parents' attention is definitely engaged. "Your
daughter is blind?" they ask me. "Totally blind," I reply.
Hearing that a totally blind child somehow manages to
accomplish all these normal tasks gives the parents heart. It
also opens the door to a discussion of blindness skills, the
key, of course, to a blind person's managing such tasks.
Suddenly the parents on the other end of the phone see a
vision of a normal life and get a glimpse of how this life
might be achieved.
Many times the conversation goes on to how parents might
enhance a blind baby's development; sometimes we brainstorm to
resolve a specific problem the family is experiencing. Usually
I advise those parents to eat their Wheaties because they'll
need their strength. I tell them I'll send them some
literature to read. I invite them to one of our Parents of
Blind Children gatherings to meet other families and some
blind adults. I let them know that they're doing the smart
thing by reaching out and gathering information and that their
child is lucky to have them. The closing words from the
parents are almost always: "Thanks. You've made me feel so
much better."
Parents feel better because they begin to see the
possibility of a bright future for their child; they begin to
believe they'll be able to manage what needs to be done; they
realize others have gone successfully down the road that is
before them. Feeling better enables parents to start down that
parenting road with a belief that will support them during
both the easy times and the challenging times: that blindness
need not stop their child from leading a fulfilling, normal
life.
Contrast this with the approach found in Children with
Visual Impairments. First of all, in the book blindness is
labeled a "misfortune" and parents are told that they "may
feel as if they must have done something to be singled out for
this bad fortune." Janice Herring, author of this chapter,
"Adjusting to Your Child's Visual Impairment," comforts
parents with the statement, "You know you would never have
deliberately done anything that you could have foreseen would
result in your child being born with a visual impairment." So
much for the possibility that it might be okay to be blind.
The authors made a decision to use the term "visual
impairment" instead of the word "blindness." Much is made in
the early part of the book about the fact that most visually
impaired children have "some useable vision" and that very few
children are actually blind--meaning totally blind in their
nomenclature. (In the book's glossary under the entry
"blindness," it reads "See total blindness.") I suppose
parents are meant to be comforted by the idea that their child
is probably not blind. The authors tell us, "Even children who
are considered blind often have some visual perception of
light and dark that will assist them as they learn about the
world," and "rarely do we assume that a child has absolutely
no vision unless his eyes have been removed. . . . If the
child has some level of visual ability, it may be used for
important tasks such as orientation and mobility and daily
living skills." No mention is made of the fact that children
with no vision at all manage orientation and mobility and
daily living skills by using the skills of blindness. What are
the messages here? That first of all, chances are your child
is not blind; second, your child needs vision to accomplish
the tasks of life (Lord help those poor totally blind kids!).
Parents are told to rearrange the environment and to encourage
the child to use that vision. Since the skills of blindness
are not mentioned, there is no hope if the child has no
eyesight to use for tasks.
The emphasis on eyesight over blindness skills has tragic
implications, as shown in the following story, from the
chapter "Adjusting to Your Child's Visual Impairment." The
parent-author, Janice Herring, tells of taking her children to
the zoo and feeling depressed about all that her severely
visually impaired son would miss. Her sadness changes to
pleasure and pride, however, when he enjoys looking at the
animals he could see and shows "his commitment to peering into
every cage--even those where I know he saw nothing." What are
the implications for the future for a child who so early
learns that to elicit pride and pleasure in one's parents, one
needs to pretend to see?
The fundamental idea that it is awful to be blind
underlies most of this book and is the assumption from which
most of the ideas and suggestions flow. Few would deny that
parents need to adjust to the idea that their child is blind,
but does the dreadful picture drawn by this book of the
visually impaired child and his or her effect upon family life
help with this adjustment? Consider the following premises,
all taken from the book:
"There are a multitude of reasons you may feel
intimidated or inadequate at the prospect of raising a child
who can't see. It would be impossible to list them all...."
Parents "may spend every waking moment thinking or
talking about their child's visual impairment...just trying to
fathom all the ways that their child's life will be different
than expected... Then they begin agonizing over a new concern:
how will this disability affect my family? Will her special
needs consume all our time and energy until we have no time
for our own interests? Will she be more of a burden than a
friend to our other children? Is there any hope that we can
still have a 'normal' family life?" (Incidentally, the author
does not answer "yes" to that last question.)
"Like many parents, you might eventually want to seek
counseling for the chronic grief that can go with having a
child with a disability."
The story "Welcome to Holland" is printed, which relates
how your trip to Italy was diverted and you land instead in
Holland, where "you must stay." After the story, the chapter
authors write, "But you, the parent, aren't the only one
living in Holland. Your child will spend his entire life
there, while other children take off for Italy and other
flashier destinations."
Another author states, "In fact, it is not unusual to
wish that your child would just go away."
Resentment is called "a perfectly natural reaction to
having a child with a visual impairment."
The overall portrait of the visually impaired child is a
rather frightening one. In it we see a child who will have
trouble eating, sleeping, toileting, communicating, moving,
and even cuddling. His "learning will be limited" and he will
"almost invariably" lag behind sighted children. This child
will read at a slower rate and might need to spend more years
in school. She will have fear of the unknown, fear of open
spaces, and will "be terrorized by a blood pressure cuff."
This child will be unable "to observe and imitate" and unable
to "see similarities and differences among objects in the
environment." This child will grow up into an adult who might
be able to work or live on his own. The words of one
parent/author capture the feeling the reader is bound to be
left with: "We still don't know all the things Casey won't be
able to do."
I can't help thinking that new parents being bombarded
with messages like these might find it a bit difficult to
develop a positive attitude toward blindness. They might even
begin to feel a bit depressed. (In fact, I strongly suspect
that a few of the authors of this book are depressed!)
Many times in the book, the choice of words, along with
the underlying attitude, conveys the negativity. "You will
disable your child more in the eyes of others if you treat her
as if she is more helpless than she is," and "many children
with visual impairments begin receiving educational support in
infancy to help them learn to cope with our visually oriented
world." These ideas can so easily be expressed in a positive
manner, one that is respectful of blind children and of the
skills of blindness that they will be learning.
Much ado is made in this book of the impact a visually
impaired child will have on every aspect of family life. The
litany of potential horrors could wear down even the most
doggedly optimistic of parents. Here are a few of the
lowlights: Your friends might leave you; your marriage might
fail; you might go bankrupt ("meeting the everyday and special
needs of children with visual impairments is expensive...the
loss of income for missed days of work and health insurance
co-payments and deductibles...the list of potential expenses
goes on and on"); in fact, having this visually impaired child
might be so expensive that "your other children may have to
wear hand-me-downs or forgo music lessons or Little League";
you might be so frazzled at day's end that "you have no energy
left for socializing or even for asking your kids how their
day went"; you'll have "many sleepless and tear-filled
nights"; everyday tasks such as breastfeeding and diapering
your visually impaired baby become events for which you must
find means not to "frighten, harm, or humiliate" your child;
if you need a break, maybe you'll be able to find a sitter
"willing to try" and you will realize somewhere down the line
that, even though you might think your child looks like a
normal child, others do not.
If your shoulders are not already sagging under this
burden, take a look at how the authors say your other children
will be affected: they might experience responses to their
sibling's disability "ranging from anger and resentment to
anxiety and grief," feelings which, the authors assure us, are
"perfectly normal and nothing to be ashamed of." I can't help
wondering, might there be any other range of emotions with
which siblings might greet a new member of the family? Might
there be love? joy? neutrality? acceptance? pleasure? Not
according to this book. (My son's speech to NFB of New
Jersey's state convention when he was seven years old comes to
mind. "As a brother of a blind child, I think it's fun to have
a sister who is blind! We play lots of games together. It's
really pretty regular to have a blind sister. Come on--she's
only a kid!" And "Because my sister is blind, I have gotten to
know lots of friendly people--her Braille and cane teachers
and all the people in the NFB.")
Ruth and Craig Bolinger, authors of the chapter entitled
"Family Life," go on to list the "typical emotions" of
siblings--anger, resentment, anxiety, grief, guilt,
frustration, upset, scared, poke fun, make fun, embarrass,
lash out, target, and disgust. There is no suggestion
whatsoever that sibling relationships might be loving and
normal. (Ironically, these same authors counsel that children
are not born with responses and opinions and that "when the
time comes to teach siblings about your child's visual
impairment, you can give them the attitudes, opinions, and
responses you want them to have." I'll say!) Even if you think
your other children are coping well, the book warns, be on the
lookout for unexplained illness, poor schoolwork, nightmares,
and loss of interest in play. But fear not, your normal
children can attend a sibling support group, where they can
discuss "why they feel the way they do": and talk about
"subjects that make all kids uncomfortable."
No wonder the authors feel you might want to get rid of
this child! Do these potential pitfalls exist? I suppose they
do. But since the possibility that a family might actually
live through the experience of having a visually impaired
child successfully is never suggested, parents reading this
book might well conclude that these negative experiences are
likely.
The assumption that blindness is awful surfaces in
various sections of the book. In the self-esteem chapter, for
example, the authors (Dean W. Tuttle and Naomi R. Tuttle) tell
us that "problems and crises stemming from impaired vision"
will cause the child to struggle through trauma, shock,
denial, unreality, mourning, withdrawal, succumbing, and
depression, before arriving at self-acceptance and self-esteem
(the reader needs a high tolerance for psycho-jargon). A
warning is also issued against comparing your child's
achievements to those of sighted peers and against setting
"unrealistic" goals. These authors did, however, write the
warmest lines in the book. In regard to praising a child, they
write, "A child is never too young to understand that he is a
source of joy to Mom and Dad."
In the chapter called ""Your Child's Development," Kay
Alicyn Ferrell offers clear, useful explanations of the
various developmental areas but has as her central thesis
that, although not much is known about the development of
visually impaired children, what is known is that their
development is very different from that of sighted children
and much more difficult. "When a sense such as vision fails to
develop properly," the author writes, "a child's entire course
of development can be altered." Parents can take cold comfort
from her statement that "comparisons to normal development are
not really relevant for children with visual impairments. In
other words, what is considered a delay for other children may
not be a delay for your child--it may, in fact, be normal."
The explanation for this "normal delay" is, of course,
that the child is lacking vision. "It would be nice if the
other senses could substitute for vision--if they could
provide the same type of information that helps babies to
learn and form concepts about their world and if they could do
so as frequently as does vision. Unfortunately, they do not."
Parents are told that without eyesight their child will have
"no memory of what objects feel like," that life will appear
as a "jumble of isolated experiences," that parts of their
child's concept development will be like "putting a puzzle
together without seeing the photograph on the box," and that
their child "has no way of knowing what that meow, growl, or
purr is." (More than a little sighted bias is evident in some
of these statements.)
Parents are informed that vision is involved in 90
percent of early learning, "but the way your child learns
about the world is going to be different. To a greater or
lesser degree, your child will have to rely instead on her
senses of smell, touch, hearing, and taste for information. As
mentioned above, this will make it harder for your child to
learn because she cannot watch and imitate...and may make her
less motivated to learn." In addition, we learn that "moving
independently from place to place seems to be one of the most
difficult skills for children with visual impairment" (would
that be with or without a cane? I wonder), that "children with
visual impairments typically have trouble with certain aspects
of communication," that they are likely to be reluctant to
explore their environment, and that even attaching to their
parents seems to be harder for visually impaired babies
because they "send different signals," and "they often do not
seem to cuddle like other babies."
No one would deny that eyesight contributes a great deal
to the development of sighted babies, but what is the point of
bludgeoning parents of visually impaired children with the
idea that their child, because of the lack of this particular
sense, will have difficulty in virtually every area of
development? What is the point of this reverence for eyesight
when writing for parents of visually impaired children? Where
does this leave the parent? Will it help parents develop a
genuine respect for the alternative ways their child will use
to learn about the world? What is to be made of the author's
seeming determination to convince parents of the differences
and difficulties their children will encounter in every area?
Wouldn't it have been much more useful--not to mention
uplifting--simply to explain to parents in a positive manner
how visually impaired babies do learn about the world (as we
indeed know that they do) and attempt to engender a respect on
the part of the parent for the alternative methods the baby
will be using to learn about the world?
After reading this chapter, parents may well conclude
that their baby will never grow up satisfactorily. Ferrell
assures us that all this "does not mean that learning is
impossible," but a parent hearing her message may just
conclude that it is. Glaringly missing from this discussion of
development is any mention of alternative skills. Instead, I
am afraid parents will be left with the sinking feeling that
all is lost because their child lacks the one necessary sense.
Yet this author is the same enlightened Professor Kay Ferrell
who courageously argued in the pages of the September/October,
1996, issue of The Journal of Visual Impairment and Blindness
that the time has come to end vision-stimulation programs
because they aren't helping children with low vision.
The chapter's suggestions for ways in which parents can
foster their child's development are generally useful ones,
but even they contain that negative impulse: "Use touch. Your
touch means a lot to your child. Sometimes a touch on the
shoulder can be just the reassurance your child needs to plod
ahead!" and "Try closing your eyes before you try to hold and
drink from a cup...to get an idea of what you are asking your
child to do...It might not be as easy as it seems!" A few
words about blindness skills and the fact that blind people do
such tasks every day would have been welcome.
Many good suggestions are offered in the chapter called
"Daily Life" and the author, Beth Langley, does refer to
adaptive skills, although the reader must wade through a lot
of negative language to get to them. For example, the author
writes, "Toilet-training is another area of difficulty for
children with visual impairments," but then she goes on to
suggest the normal training activities. In her conclusion she
states that "when a child has a visual impairment, helping him
achieve independence may not only be more challenging but
emotionally draining for both you and your child." She goes on
to say that: "You will likely have to make small adjustments
in attitude and in your child's environment. With planning,
consistency, and creativity, however, you cannot only foster
independence but also self-esteem, acceptance, and competence
in all aspects of your child's life." I think this author is
on the fence. She seems to believe that blind children can
make it ("The key is to encourage independence and competence
in everything you do or say"), but she seems to be just
learning how to write about blindness using positive words.
The chapter called "Children with Multiple and Visual
Disabilities" by Jane Erin gives an overview of conditions
that often occur with visual impairment. Although parents may
find the medical section of this chapter scary (toxoplasmosis
is a parasite "which can invade the brain and eyes"), in
general the chapter offers positive suggestions for helping a
multiply disabled child learn to move, act on the world,
interact with others, and learn language.
The basic premise of the "Orientation and Mobility"
chapter by the late Everett W. Hill and Mary-Maureen
Snook-Hill is that "orientation and mobility training promotes
safe, efficient, graceful, and independent movement through
any environment, indoor and outdoor, familiar and unfamiliar."
The authors also advocate early training in O&M and offer a
discussion of "foundation skills" that is quite useful despite
a bit of jargon. The discussion of formal mobility skills'
leading to eventual independent travel, however, is the
standard fare, beginning with "self-protective techniques" and
giving much weight to the sighted guide.
The authors take a position of apparent neutrality
regarding the various "mobility systems"--sighted guide, the
long cane, alternative mobility devices, dog guides, and
electronic travel aids--and this is problematic. I suppose
their intent is to offer objective information, but the fact
is that the different systems are not equal because they do
not lead to the same level of independent movement. The
authors do not discuss the systems in terms of this ultimate
test (independent movement), but I think it is the one that
would matter most to parents. But parents new to blindness may
not yet be able to make this analysis, especially when
presented with what appears to be such objective, neutral
information.
For example, the authors explain each system and then
list advantages and disadvantages to each. Under sighted guide
they list as an advantage that "it provides maximum safety to
the child during movement." What message does this give the
parent? That the child will not be safe if moving alone! The
authors also mention that "sighted guide provides
companionship as well as information about the surrounding
environment." The mention of companionship feeds fears and
stereotypes about the poor blind person who must rely on the
kindness of strangers for companionship. The second half of
the quotation, concerning environmental information, may lead
parents to conclude that the only way a blind person can have
any idea of where he is is if a sighted person is there to
tell him.
Some bias, or at least preference, is revealed in the
Alternative Mobility Device section. These devices are
described as easier to use conceptually and motorically and
requiring less instruction than canes, but do they provide the
same result? The authors do not mention that these devices
require the use of two hands, thus making it impossible for
the child to carry something or to hold hands with the parent
(see below). In addition they are heavier than canes and
simply do not allow as much freedom of movement. They are
discussed, however, as if they are an equivalent alternative
to a cane. The authors' bias toward these devices is revealed
in another section of the chapter, where they casually mention
that "a child in a kindergarten classroom may need formal O&M
instruction to learn basic sighted guide skills,
self-protection skills such as trailing, or the use of an
alternative mobility device to travel with his classmates from
his classroom to the cafeteria and the playground." Again,
what message will the parent hear? That in order to move with
his classmates, the child must use one of these devices and
not a cane.
The authors define a mobility system as "a guide or
device that permits independent movement through the
environment." I suspect, however, that they are not using the
word "independent" as most parents would understand it or as
the dictionary defines it. Many in the O&M profession seem to
have convinced themselves that using the sighted guide
mobility system gives a blind traveler the same independence
as using a cane. The authors list as a disadvantage of the
sighted guide system that "independence is limited" but they
mean "because a guide might not always be available."
The chapter exhibits the usual love affair with sighted
guide that I have seen so often in professional literature.
Three pages are devoted to a discussion of the various
techniques of sighted guide, along with three photographs
which illustrate them. (In one photograph the child is holding
a cane, but it is close to his body and high off the ground.
No canes are shown in the other photos.) In contrast, only two
pages are given over to the cane, and the only photo shows a
straight and a folding cane lying on a carpet and not in use!
(A cane appears in one other photo in the chapter, one that is
illustrating "upper hand and forearm protective technique.")
In addition, the authors hold dearly to the idea of how
actively the blind person participates when using the sighted
guide technique. Their insistence on this, coupled with my own
observations of how children behave, leads me to suspect that
they protest too much! I also suspect they haven't ever lived
with a blind child. Too many of us parents have had the
experience of our children being taught this system and then
being only too content to "leave the driving" to someone else!
The authors also claim that a preschooler "needs to learn
sighted guide skills so that he can travel comfortably in
unfamiliar and outdoor settings with you." A statement like
this serves only to mystify the idea of a blind child's
movement, rather than to simplify it. Those of us who take a
common sense approach to raising our blind children know that
you don't need a "system" composed of complicated, rigid
techniques that must be taught by a highly trained
professional simply to take a child out for a walk!
The emphasis on technique strikes me as overdone. The
discussion of cane technique, for example, is quite rigid and
supports (perhaps unintentionally) the position of some cane
instructors that very young children should not be given canes
because they cannot yet perform the techniques correctly. The
emphasis given to technique, in fact, becomes almost
reverential in two parts of this chapter. First parents are
advised not to hold hands with their child. ("Whenever
possible, you should encourage your child to use the proper
grip.") I feel sorry for parents who might be inclined to
follow this advice, for they might never experience the pure,
normal pleasure of holding hands with their small child!
Incidentally, the proper grip entails "grasping the guide's
wrist, positioning the thumb to the outside and the four
fingers to the inside of the guide's wrist. The grip should be
secure, but comfortable for the guide. The child holds his
upper arm parallel and close to the side of his body, forming
approximately a 90-degree angle with his lower arm so that he
is positioned approximately one-half step behind the guide."
I cannot help thinking that this, along with the detailed
instructions about "narrow passageway technique" and "stairway
technique," are much ado about very little!
Later, in a section called "Modifying Your Home," the
authors explain that some consistency in the home environment
will allow the child to become familiar with the spatial
arrangement and to develop confidence in his mobility. It is
then suggested--incredibly, I think--that after the child
learns where all the furniture is, parents should move it
around! "Move the toy chest to a different corner of the room
so your child has to use his self-protective techniques to
travel the new route." The question must be asked, who or what
is being served here, the child and his independent mobility
or the system and its techniques? Does any person need this
kind of outer-imposed stress in his or her own home?
Other problems exist in the "Modifying Your Home"
section. Since the authors' premise is that "how your home is
arranged can greatly affect the development of O&M skills,"
parents may get the idea that they will constantly be
rearranging the furniture in order for their child to move
about the house. First it is suggested that "you could
initially arrange the furniture along the wall so that he
could travel along the furniture without having to move out
into open space" (heaven forbid!), and then parents are told,
"As your child becomes more motivated and proficient, you
could rearrange the furniture and provide landmarks. For
example, when your child contacts the coffee table, instead of
continuing in the same direction along the wall, he would turn
left, trail the edge of the coffee table to the end, continue
across two feet of open space to the big chair, walk around
the chair to the wall, and turn the corner into the kitchen."
This makes getting across a room seem impossible! If this were
not bad enough, parents are then told, "As your child becomes
still more proficient, you can challenge him to continue to
use his O&M skills by creating a more complex environment.
That is, increase or decrease the amount of furniture or
rearrange it." Again, if any of these professionals ever
actually lived with a blind child, they would quickly see that
these ideas are not only impractical, but present unnecessary
obstacles to the goals of confidence and independent mobility.
I have saved the best for last. In contrast to the 226
pages that precede it, the "Growing into Literacy" chapter is
downright cheerful! In a noticeably different and refreshing
tone, the author of this chapter, Alan J. Koenig, writes about
visually impaired children as if they were on a par with
sighted children! He makes laying the foundation for literacy
seem not only possible, but simple and fun. The author points
out how the early experiences a visually impaired child needs
are the same ones that sighted children need, with simple
adaptations made for blindness. Parents will be empowered by
this information; it will help them to feel competent,
knowledgeable, in control of the situation, and on the right
track.
Bias toward eyesight is evident in many chapters of this
book, but not in this one. With much common sense the author
writes, "If your child has vision, visual information should
be paired with other types of sensory information. . . .
Visual information should not be the only source of
information. Again, the more senses that can be used to learn
things, the better."
The author is clearly a Braille enthusiast who pleasantly
addresses the usual criticisms of Braille, includes a
reference to the "handy slate and stylus," points out that
audio tapes and technology do not replace literacy, and
several times suggests making contact with a blind adult!
In conclusion, too much of this book expresses a negative
attitude toward blindness; parents will be left with little
hope. Too many qualifications are placed on the child's
chances for success (the phrase "as independent as possible"
is used repeatedly); there are far too few references to the
skills of blindness. The absolute distinction made between
visual impairment and blindness will keep many children from
learning blindness skills that would enable them to function
more efficiently, thus vastly reducing the "frustrations" and
"problems stemming from visual impairment" to which the
authors so frequently refer. Many references are made to
turning to others for help--friends, relatives, doctors,
counselors, and especially "vision professionals."
Surprisingly little emphasis is given to finding other parents
of visually impaired children. One author mentions consumer
groups, and one author actually suggests seeking out a blind
person.
Each chapter ends with parent comments. I do not
understand why the book's editor chose to include them, since
they are, for the most part, very negative and quite sad. I
suppose their inclusion flows from the book's basic premise,
that blindness is absolutely awful. I know from the
professional literature that there is a (large) school of
thought that parents who do not dwell on how handicapped their
children are and who instead decide to pick themselves up and
just move forward, are in denial. I am also reminded of a
certain style of parent support group, in which success seems
to be measured by how many people are crying by meeting's end.
Mention is made a few times in the book of the idea that
"your child is a person first and only secondarily a person
who happens to have a visual impairment" and "visual
impairment is only one of your child's characteristics" and
"we must be diligent in our insistence that there is no shame
attributed to the word 'blind.'" Still, these end up being
only lip service. The book speaks for itself in its studious
avoidance of the B-word and its clear message that every
aspect of your child's life and your family's life will be
negatively affected by visual impairment. Parents new to
blindness are not likely to have any defense against this sort
of negative view, and more experienced parents will not need
the basic information this book provides.
Newsline For The Blind Network:
A Nationwide Newspaper Service For The Blind
Lifetime learning, including detailed awareness of
current events, is part of what makes a good citizen, a
successful employee or employer, and a valuable participant in
community life. Without ready access to information, none of
us can reach his or her full potential. Until 1995 the
nation's blind people did not have the promise of ready access
to a fundamental source of such information--the daily
newspaper. But now the National Federation of the Blind has
created Newsline, a new system for transmitting the
information in newspapers and other sources to blind persons
at the same time it is available to sighted readers.
* How Does Newsline Work?
The NFB has designed this revolutionary system to receive
digital transmissions from newspapers on the morning of
publication, convert this information into computer-generated
synthetic speech, and transmit the information to a Local
Service Center (LSC) which blind persons can call on touch
tone phones.
* What Does Newsline Do?
The national Newsline network now provides USA TODAY, the
Chicago Tribune, and the New York Times. Other nationally
known newspapers may soon join. Local Service Centers (LSCs)
can distribute area newspapers through the same service. In
addition to carrying the news, Local Service Centers can also
use one or more special channels to distribute announcements
of specific interest to the blind.
Newsline is at last making it possible for blind
individuals to gain access to the information in newspapers at
the same time as their sighted colleagues, friends, and
family. Blind professionals, for example, can converse on
relevant topics, no longer being under-informed about
information critical to their profession or left out at social
functions when the latest editorial is discussed. Beyond this,
a wealth of other information, primarily found in newspapers,
is now also available to the blind on an equal footing, making
possible their participation in the life of the community on
the basis of equality.
* How Easy is Newsline to Use?
Very easy. The user simply dials the Newsline number and
their personal security code number from any touch tone phone
in the service area. Once "logged" onto Newsline, the user is
given a menu of choices from which to select which paper they
wish to read, what section of the paper they want, and so
forth. The user makes menu selections by pressing the
appropriate keys on the touch tone telephone. The user may
also browse through the newspaper by pressing specific keys to
move forward, backward, find words or phrases, pause, slow
down or speed up the speaking rate, and even change the
speaking voice (the user has the choice of 9 different
voices).
The reading is done by synthesized speech, DECtalk. It
does not have the uneven quality of the voices and reading
skills of a group of volunteers but is absolutely uniform and
dependable. After a short period of strangeness it becomes
completely unnoticeable. One is aware of reading the newspaper
and not of the voice, which is essentially what happens to the
sighted reader: the sighted reader is not constantly aware of
the print and the sheet of paper but only of the text.
* What Does Newsline Cost?
Newsline is a free service to individual subscribers. The
cost of providing the service, paid from local sources,
includes (1) one-time initial establishment costs, and (2)
ongoing operational costs. The exact cost within each of these
categories will vary depending upon the size of the population
to be served and differences in local telephone rates.
One-time costs include an LSC's initial establishment
fee, an additional charge whenever a local newspaper is added
to the service, and the cost of installing the desired number
of telephone lines. The ongoing operational costs of an LSC
include a network service fee, charged at a flat rate per
month; a small additional charge to cover the cost of
including any local newspaper; and the regular monthly charges
for local telephone service, which may vary somewhat
throughout the country.
It is important to note that maintenance of service for
the LSC is fully covered by the network service fee. This
means that the center can continue to operate without
additional establishment or ongoing expense.
* How Can I Get a Newsline Local Service Center Established in
My Area?
New LSCs must be funded. Members of the National
Federation of the Blind are working to establish new centers
as quickly as possible. To do this, it is necessary to obtain
funding commitments from interested organizations, agencies,
and other sources. If you have information or ideas about
possible funding sources that you would like to share with the
National Federation of the Blind, please contact Newsline at
1800 Johnson Street, Baltimore, Maryland 21230; or call (410)
659-9314.
Tips For Using Newsline For Classroom Activities:
Newsline is a totally electronic telephone delivery
system which uses computer synthetic speech. Newspapers and
other material are available by 7:00 each morning. The entire
text of today's, the previous day's, and the most recent
Sunday's issue of each paper is available by simply dialing a
conventional phone.
Newsline for the Blind is currently available in about 32
service areas around the nation.
Students who are unable to read conventional print due to
a visual disability or are physically disabled and registered
with the State Library for the Blind and Physically
Handicapped can become registered with Newsline by simply
filling out a short form and mailing it to the NFB at 1800
Johnson Street, Baltimore, Maryland 21230. Identification
numbers and security codes are then issued to each child. This
number and code allows the reader to use any touch tone phone
to access Newsline.
TIPS FOR TEACHERS
1. A current events reading assignment or project that
involves reading newspapers can be done with the use of
Newsline. The disabled student has the flexibility to read
quickly over headlines or a few sentences of an article, thus
making it possible to look easily for articles related to an
assignment.
2. Assignments that deal with writing can use Newsline as
a tool that encourages students to become familiar with the
newspaper journalism style. After reading assignments and
discussion students could be assigned a writing task. The
students' writing styles could then be compared to material in
the newspapers. If possible, the teacher could use a speaker
phone in the classroom so all students could listen to the
styles being discussed. Learning would cover several
dimensions including reading, writing, comparison, and
listening skills.
3. Newsline is a good way to introduce students to
synthetic computer speech. Even if students are a little young
for serious reading of newspapers, Newsline may be interesting
because they can have fun using telephones and listening to
novel synthetic speech. The system allows for the change of
voice inflections and rates of speed, as well as commands for
moving around in the text.
4. Blind and visually impaired students can demonstrate
Newsline as a class public speaking project. This new
technology will be interesting to the other children and a
demonstration will help them understand, in a way that is fun,
how blind persons do things differently.
5. Contests using Newsline can be offered to students
with disabilities or integrated into regular classroom
activities. For example, students can be challenged to find as
many articles as they can that have to do with foreign policy.
This can serve as an exercise in using the system, a learning
experience concerning the concept of foreign policy, and all
through the use of their own familiar telephones.
The possibilities are many. We are all invested in
improving educational opportunities and encouraging literacy
among our blind and visually impaired youth. Newsline can be
a helpful tool.
To find out if there is a Newsline service in your area
and how you may register for it, call the National Federation
of the Blind at (410) 659-9314. For other questions or
information about Newsline or other services to children and
youth please contact: Mrs. Barbara Cheadle, President,
National Organization of Parents of Blind Children, (410)
659-9314.
DOS Or Windows?
by Carol Castellano
The following item is reprinted from the December, 1996,
In Touch, the newsletter of the Parents of Blind Children
Division of the NFB of New Jersey.
We are in a time of transition in terms of computer
access for blind people. As the world is switching over from
text-based systems (DOS) to graphics-based systems (Windows),
blind computer users must deal with the lag time that exists
between the development of new computers and the development
of the adaptive technology that can make them accessible to
the blind. DOS screen readers are still easier to use by blind
people than screen reading programs for Windows. But the
reality is that DOS programs are becoming obsolete and blind
people in the work force must eventually learn to use Windows.
This time of transition poses many questions for parents:
What would be the best system for my child to learn? We have
an old computer, would it make sense to outfit it with speech
or Braille access? We can get an older system almost free, but
would it make sense for my child to learn to use programs that
are becoming obsolete? My child is already using DOS, should
he/she switch over to Windows? What should we do about school
computer class?
Answers to these questions will vary according to your
child's situation. For example, the family of a three-year-old
blind child might not want to invest in a new computer
equipped with Windows and Windows access, but the parent of a
high school student might. By the time the three-year-old is
ready to learn word processing and how to access the WEB,
better screen readers will no doubt be on the market; so for
now, perhaps an older computer would make more sense. The high
school student, on the other hand, might need to develop
job-related skills now. Many blind adults in the technology
field feel that it is never a waste of time to learn a useful
program, even if one intends to switch to a different program
in the future.
As you consider technology for your blind child, you
might want to visit the International Braille and Technology
Center at the National Center for the Blind in Baltimore. On
display there are samples of virtually every piece of Braille
and speech equipment available. The Center's Director, Richard
Ring, will also consult by telephone. Call (410) 659-9314.
Resource for Parents in New Jersey
Arianna and Lou Calesso, blind adults from Morristown,
New Jersey, and the ATT Lucent Pioneers Club have developed a
service which provides accessible computers to blind people.
The Pioneers and others donate the used computers; the
Calessos procure and install the special adaptations.
The blind adult or child receives a computer equipped
with software for Wordperfect 5.1, screen access,
communications, games, and an additional simple word
processing program called QWERTY; and external speech
synthesizer; and a typing tutorial. In addition to the
software programs, tutorial tapes for Wordperfect 5.1, DOS,
the screen reader, and QWERTY are included. The only cost to
the blind person is that of the speech synthesizer
(approximately $275). The Calessos also offer replacement of
problem computer parts and ongoing technical support. Call
Arianna Calesso at (201) 898-3866 if you are from New Jersey
and interested in this service.
Virginia Parents Battle Teacher Shortage
Editor's Note: Vicki Messick, President of the Virginia
Parents of Blind Children, Division of the NFB of Virginia,
has been active in the NFB for less than five years. Yet, in
that brief time Vicki has worked closely with local and state
NFB members to rally parents to attack system-wide problems of
shortage of Braille teachers, excessive case loads, poorly
trained aides, and many other problems. The following article,
the fourth in a series, demonstrates what can happen when
parents make the power of the NFB their own and accept the
challenge to--as so aptly put by Julie Hunter in the lead
article in this issue--"get to work."
Schools to Hire Second Teacher for Visually Impaired Students
by Sandra Tan
Reprinted from the Hampton, Virginia, Daily Press,
December, 1996.
The Hampton School Board agreed Wednesday to hire another
full-time teacher in response to parents' complaints and some
state attention regarding quality of service for the visually
impaired children.
Board members also directed Superintendent Billy Cannaday
to address any other parental concerns regarding services for
these children.
"We will monitor the progress of this very closely," said
Chairman Jim Haggard.
Cannaday said the search for an additional teacher
certified in vision impairment disabilities will begin
immediately.
Currently, the school system has one vision specialist
and an assistant who travel to individual schools and provide
services to about 25 students, a few of whom are seen on a
monthly basis.
The Virginia School for the Deaf and Blind has also been
contracted to provide about a fifth of the required student
services.
But parents of visually impaired students in Hampton said
that by having only one full-time vision teacher, Hampton was
shortchanging their children. By contrast Newport News has
three full-time vision teachers serving about 34 students.
In addressing the board Wednesday, Vicki Messick,
president of a local [and state parent's] chapter of the
National Federation of the Blind, said, "We as a parents group
appreciate your effort in recommending...the hiring of another
vision teacher. Unfortunately, this recommendation is too late
for most of the visually impaired children in Hampton."
Messick said she and other parents planned to file a
formal complaint against Hampton for its "discriminatory"
actions against visually impaired children with the U.S.
Department of Education Office of Civil Rights by December 20.
She also outlined several issues that she said had yet to
be adequately addressed by the school administration:
* The current use of an "unqualified," full-time vision
assistant who does not have certification in vision
disabilities but works with students outside direct
supervision of the certified vision teacher.
* The need to have a qualified teacher with vision impairment
credentials consistently present at all meetings that
determine a student's eligibility for vision services, as well
as the development of specific education plans for students
believed to have vision impairments.
* The need to improve the criteria used to determine a
visually impaired child's eligibility for preschool services.
Jack Jones, grandfather of a 6-year-old with low vision
and other disabilities, complained to the board about the lack
of preschool services his granddaughter received, including
vision services.
"The people who were turning us down really didn't have the
background to do this," he said. "I want to know where a lot
of the faults lie with her not getting the help she needed
from age 2-1/2 to 5-1/2."
Both Jones and Messick were urged to meet with Cannaday,
who promised to address their concerns.
"I do think we can bring resolution to this," Cannaday
said.
Rocky Bottom Camp Of The Blind Hosts
Southeastern Leadership Seminar Of The
National Organization of Parents Of Blind Children
November 8-10, 1996
by Sheila Compton
Editor's note: Sheila Compton is a member of the Board of
Directors of the National Federation of the Blind of South
Carolina and a member of the South Carolina Parents Division.
This article is reprinted from the November/December, 1996,
issue of The Palmetto Blind, the newsletter of the NFB of
South Carolina.
The National Organization of Parents of Blind Children,
a division of the National Federation of the Blind, held its
Southeastern Regional Leadership Seminar at Rocky Bottom
during the weekend of November 8-10, 1996. National
representatives included Barbara Cheadle, President of the
National Organization of Parents of Blind Children; Carol
Castellano, Second Vice President of the National Organization
of Parents of Blind Children; Ruby Ryles, educator of blind
children; and Sandy Halverson, long-time leader in the
Federation and a Missouri resident. Leaders from state
affiliates in Georgia, North Carolina, Alabama, and our own
Frank Coppel and Sheila Compton from South Carolina were also
in attendance.
Approximately 30 individuals attended the seminar which
included parents of blind children from Alabama, Florida,
Georgia, Tennessee, Louisiana, and North Carolina.
The seminar was designed to provide information to
parents regarding blindness, development and education of
blind children, the importance of alternative techniques,
parent advocacy skills, and the role of the NFB and NFB
Parents Divisions in the lives of their children. Parents were
given the opportunity to interact with blind adults and to
share information about the education and development of their
children.
Discussions and group activities included a panel of
blind adults discussing their childhood, education, and
careers; an Individualized Education Program workshop,
demonstrations of independent living skills, Braille, and cane
travel; and a "History Through Song" of the National
Federation of the Blind.
Time was also spent discussing ideas and strategies to
strengthen existing NFB parent divisions and developing new
state divisions of organizations of parents of blind children.
All participants expressed their appreciation and felt
the seminar was a tremendous success. Everyone was impressed
with the hospitality and facilities at Rocky Bottom. They
expressed a strong desire to make this seminar an annual
event.
Editor's Note: That's the article Sheila Compton wrote
about the seminar. The following letter is a more personal
reflection from a participant in the regional conference:
REFLECTIONS ON THE SOUTHEASTERN LEADERSHIP SEMINAR
by Pat Jones, President
Tennessee Valley Parents of Blind Children
March 5, 1997
Barbara, I'll try to give you our insights on the South
Carolina Parent Leadership Seminar.
The Friday afternoon question and answer panel of NFB
blind adults gave invaluable information for us as parents of
blind children. The three of us from Tennessee talk about it
often. In fact, to prove how much we liked it, we are going to
do a similar panel at our State NFB Convention in a couple of
weeks. It added food for thought when each panel member was
asked to answer the same questions. GREAT idea. We'll use this
in the future.
The cooking demonstration helped answer some questions
many parents have. We all agreed that the chicken and rice
[cooked by Sheila Compton] was unbeatable! Amanda and I
sometimes get frustrated about how she can do things safely in
the kitchen. (April's not a cook. Boys are on her mind as the
most important thing right now.)
One day we were going to bake an apple pie. I tried to
show her how to peel an apple. She kept trying to cut into the
apple rather than just peel the outside off. She stomped off
to her room and decided she'd never be able to master this.
She finally returned to the kitchen even though I didn't try
to coax her back. We decided I would peel, and she could cut
them in sections.
The next day I asked Debbie Robinson [a local blind
member of the NFB] how she peels apples. She said she peeled
the same way I do it, but David [Debbie's husband who is also
blind] told us that he quarters his first and then peels.
We're sure this way will work.
Sandy Halverson is an excellent song leader, and I think
this will be another fun thing to do with our kids at one of
our parent meetings. [Editor's Note: The songs we sang were
all NFB songs taken from our official NFB Song Book. Similar
to patriotic or folk songs, these songs were written by blind
people about important issues which they have faced throughout
the history of the NFB. Some of the songs are funny and
tongue-in-cheek; others rousing and spirit-lifting; and still
others chronicle society's unequal treatment of the blind. For
example, "I've Been Working in the Workshop" and "Blind
Workshop Blues" describe, through song, the frustration and
despair of blind workers paid sub-minimum wages under poor
working conditions in workshops for the blind.]
I hope the brainstorming we did in groups helped the new
parents in the states with no parent groups get ideas about
how to start an NFB Parents of Blind Children Division in
their state. I feel we could probably go a little further and
do more to keep in touch with these parents to see how we can
help.
Jerry participated in the cane-travel demonstration with
Frank Coppel (Frank is blind). He felt it was very
informative. Since I didn't get to do this activity, I can't
include my comments. Even though I planned to participate in
this there just wasn't enough time for everything.
The "get acquainted" game was a lot of fun also. AND, the
accommodations were wonderful! How lucky they are in South
Carolina to have that beautiful camp. I only wish we had more
time for "nature loving." The couple from Florida loved the
snow on Sunday morning, but those of us from the mountains
just wanted to get down off that mountain before the snow made
it too slippery to leave. Excellent choice for a place to hold
a leadership conference, Barbara. You get an A+.
Book Review
Extraordinary People With Disabilities
by Deborah Kent and Kathryn A. Quinlan
Children's Press, 1996
* Review by Doris M. Willoughby
This book brings together 48 biographies of people who
made their mark upon the world and who had various
disabilities. Each article is three or four pages long.
Children in the upper elementary grades and above can read
this book for themselves, and younger children can understand
it when it is read aloud.
Some of the people featured are very well-known, such as
Franklin D. Roosevelt and Helen Keller. Others are not as
famous but have made important contributions. The general
style of writing is upbeat and interesting without being
mushy.
Eight of the featured persons were/are blind or visually
impaired. Also, one of the authors, Deborah Kent, is herself
blind.
Dr. Jacobus tenBroek, founder and first president of the
National Federation of the Blind, is included. A candid photo
shows him surrounded by microphones on a street corner.
Presumably on a small platform, he stands higher than the
reporters around him. As he speaks, he is reading from Braille
pages which are supported on top of an assistant's head. (A
real-life portrayal, for sure!)
The biography of Louis Braille includes a clear
explanation of why raised print was and is impractical.
In addition to the actual biographies, there are several
short chapters which discuss background and issues (including
attitudes toward disabilities) in a concise, clear manner.
These, also, are matter-of-fact and positive in tone.
A glossary defines important terms. Furthermore, when a
term such as abolition [of slavery] is first used in the text,
a definition is often given on the spot.
The only "drawback" which I noticed was that, as an adult
reading the book through from cover to cover, I began to feel
that the style was somewhat repetitive. However, this same
characteristic is also an advantage, since an important
purpose is reference; many readers may select only a few
chapters as they research a given disability. Also, a
consistent style can make reading easier for young readers.
K.I.D.S. Camp Comes To Maryland
Editor's Note: Reprinted from the September, 1996, issue
of the Grapevine a publication by and for the Associates of
Blind Industries and Services of Maryland (BISM).
Ten children between the ages of 8 and 11 came to BlSM's
KIDS Camp for the week of August 12 through 16 to learn skills
of blindness and interact with blind adults (blind volunteers
and blind staff members of BISM's Rehabilitation Department
made up the majority of the camp staff). KIDS Camp (Kids
Independence Development Summer Camp) was sponsored jointly by
BlSM's Rehabilitation Department and the National Federation
of the Blind's Maryland Parents of Blind Children Division.
The children had many opportunities to work on the skills
of cane travel, Braille, and activities of daily living--such
as spreading foods (peanut butter, jelly, and cream cheese),
pouring juice and milk, using the oven to make pizzas, and
making homemade ice cream.
They also kept a daily journal of their favorite
activities and bound them into a keepsake book to take home on
Friday. Tommy Cole, Jr., son of Baltimore BISM associate Tommy
Cole, Sr., attended the program all week. Thanks Tommy for
encouraging your son to attend and learn more about blindness.
Monday the children and counselors rode the Maryland
Transit Authority #31 bus to the Library for the Blind and
Physically Handicapped where they checked out Braille library
books; all bustled back to BISM to prepare their own
sandwiches for lunch.
Tuesday the group went to Security Mall for a scavenger
hunt where the children had to locate different merchants and
obtain an item from each store. They then proceeded to the
food court where they purchased their own lunches, handled
their own money, counted change, and obtained receipts. They
also had to carry their food and beverage on a tray, locate
their seating, then cleanup after lunch. Also on Tuesday, they
had fun with mallets pounding designs into leather bookmarks
brought in by Tandy Leather Company. Tandy also brought many
varieties of hides, furs, and skins to identify by touch and
smell.
Wednesday it was off to the Baltimore Zoo to ride the
camels. A good distance was traveled over bridges, across lily
pads, through the rain room (where all got soaked), to Africa
and back. From the zoo it was on to the park for a picnic and
a romp through the rubber tire playground. All enjoyed the
grilled hamburgers complete with fixin's.
Thursday the children made homemade ice cream then hiked
to the nearby McDonald's where they again handled their own
money to purchase lunch and managed their own trays of food.
Back at BISM they made a leather coin purse craft project.
Friday was a whirlwind of activity as children finished
their projects, made pizzas for lunch (thereby learning to
use the oven), practiced songs, and prepared for their
graduation ceremony. The Olympic theme for the graduation
ceremony was "You can be all that you want to be." Children
were presented with framed certificates, Olympic gold medals
for specific accomplishments, and individual photographs of
the week's activities.
Many thanks go out to all the people who helped make this
week a huge success for the children: Loretta White, Vice
President, Maryland Parents of Blind Children Division, NFB,
who worked countless hours to coordinate and direct the week's
activities; Kit Bloom, Children's Librarian, Maryland Library
for the Blind and Physically Handicapped (LBPH); Estelle
Williamson, Friends of the Library, LBPH; Sharon Maneki,
President, National Federation of the Blind of Maryland;
Nicole Fincham, blind youth Junior Counselor; and Rosemary
Lerdahl, Director, Rehabilitation Department, BISM.
Deaf-Blind and Determined
by Debra Conway
Editor's Note: John Salka, father of Colleen featured in
the article below, is a member of the board of the National
Organization of Parents of Blind Children, Division of the
National Federation of the Blind. This article is reprinted
from the June 23, 1996, Times Herald Record, Orange County,
New York.
Dawn Salka pushes away the Fisher Price preschool pop-up
toy and lifts her daughter from the living room floor. She
draws an imaginary line across the 3-year-old's palm and
points to the high, knotty pine ceiling.
"What's that?" she asks out loud, again drawing the line
and pointing to the ceiling. "What's that?"
At first the bespectacled little blonde seems to be still
groggy from her recently interrupted afternoon nap. Her head
bobs and flops as she scans around the room. Finally, she
fixes on her mother's extended pointer and follows the implied
direction to the overhead peak.
Colleen smiles, recognizing the answer. She forms her own
thumb and pointer into a circle, spreading the three remaining
fingers like turkey feathers.
'A fan,' she silently answers in Signed English.
"Right. It's a fan," says Mrs. Salka, smiling and hugging
her youngest child to reinforce her answer. "She used to
confuse 'fan' with 'wind,' thinking it was the breeze she was
identifying. Very good."
For a child like Helen Keller--deaf-blind, as it is
properly referred--Colleen has made great strides in her three
short years. That's due largely to her own hard work, says one
of her teachers, Lucy Lotito. And to the hard work of her
"incredible" family who has doggedly scraped for answers and
approaches to the rare condition.
"When she was born, I knew right away that something was
wrong," says Mrs. Salka, a night nurse at St. Luke's Hospital
who has four older children. "But, unlike a regular blind
person, her eyes didn't appear different. They looked normal."
By the time Colleen was 8 weeks old, Mrs. Salka had
convinced her husband, John, a New York City fire fighter,
that their newborn wasn't tracking movement. Thus began what
she calls "the course of specialists: "the genetic specialist,
the neurologist, the ophthalmologist, the audiologist, the
pediatric neurologist, the pediatric ophthalmologist, the
pediatric audiologist.
One of them finally said, "I'm sorry. She's deaf." And
another ran a test called the Visual Evoked Potential that
measured Colleen's retinal response to light. She flatlined,
leading the specialist and family to believe Colleen would be
totally blind.
By the time she was 6 months old, Colleen, like all blind
babies, was already developmentally delayed. She had no reason
to raise her head to look at something, or to roll over, sit
up or crawl to get to a fascinating object--she simply
couldn't see any.
She began morning therapy sessions at New Windsor's
Infant Toddler Learning Experience and in-home sessions with
specialists such as Ms. Lotito, a teacher of the visually
impaired who contracts through Orange County Public Health.
"So little is known," she says. "I always go in and do my
own tests."
The first test she did was to sit with Colleen in a
darkened room with only a florescent "black" light. Colleen
responded to a white tag on a glove.
"We were so excited," Ms. Lotito says. "We know we had
our work cut out for us, but it meant there was something
there to work with."
What the Blooming Grove couple eventually learned was
that Colleen's eyes are perfectly normal, anatomically. But
there is a cross-over in her cerebral cortex that affects the
way her brain processes what she sees.
Through thrice-weekly sessions with Ms. Lotito--involving
light boxes similar to x-ray view boxes, luminescent
materials, colored caps on flash lights--Colleen is retraining
her brain to accept and process visual images. She has
progressed to now seeing in normal room illumination, but only
to the point of fatigue.
"Sometimes she gets to a point and she just shuts down,"
says Mrs. Salka. "It's like a computer that runs out of
memory. One minute she's tracking fine, identifying small
pictures, and the next she doesn't see us waving our hands
right in front of her face."
But the windows of opportunity seem to open for longer
and longer periods, Ms. Lotito says, leaving her hopeful that
Colleen may someday discern letters and read. In the meantime,
however, and as a back-up to periods of fatigue, she is
teaching Braille.
The future isn't nearly so optimistic about Colleen's
hearing where various hopes have already been dashed.
"From the beginning, I started reading everything I could
on blindness, reading everything I could on deafness, calling
everybody I could think of, including the authors, saying,
'Here's my situation, what do you suggest?'" Mrs. Salka says.
"At one point, someone asked when we planned to get her aided,
meaning fit with hearing aids. No one had ever told us to do
that before."
On the theory that even a profound hearing loss could be
aided into hearing at least the blast of a jet, Colleen was
fit with hearing aids. For two years, the family and
therapists went through the motions of teaching her to
recognize various sounds--a knock at the door, the vroom of a
vacuum--all to no avail.
When Colleen was 28 months, the Salkas were excited to
learn about the prospects of a $35,000 operation that would
replace/implant one of her cochleas, the coiled, shell-like
division of her inner ear. They went through extensive initial
tests, including a CAT scan, that eventually revealed Colleen
hadn't been born with any cochleas to replace.
Her deafness would be total and permanent.
"It was heartbreaking for all of us," Mrs. Salka says,
"but James (her 9-year-old son) took it the hardest. He cried
for a long, long time. 'She's blind, why does she have to be
deaf, too?' he'd ask. And we'd have to say we didn't know."
There were none of the usual genetic causes, she says.
None of the usual pre-natal viruses, like rubella, often
associated with deaf-blindness.
"Not knowing the cause has been the toughest to take,"
Mrs. Salka says. "It's been hard. And now it's compounded by
the various dynamics going on in the house. Maureen (the
7-year-old middle child) has a very hard time with the idea
she can't bond with a normal sister. The boys (John, 10,
James, 9 and Brian, 5) lay in bed at night and talk. But she
can't. There's resentment and vying for attention all around.
Everyone that comes to the house, comes to see Colleen.
"Usually I'm too busy to let myself feel anything," she
continues. "Then it builds. Then it hits me all at once. One
day in church I was listening to Maureen in the choir and it
hit me that Colleen will never hear music. I began to sob so
loudly, I think everyone heard me."
Because of the rarity of deaf-blindness, (she's seen
statistics that indicate less than 0.1 percent of the
population is affected) there are no support groups to turn
to. Fortunately, by attending regular conventions of the
National Federation for the Blind--where the Salkas have drawn
hope from seeing thousands of high-functioning, happy people
with handicaps--they've created their own support network
around the county.
"It was not until we went to our first convention in
Detroit, and met a mother of a deaf-blind 15-year-old, that I
began to get a handle on what we are dealing with," Mrs. Salka
says. "The mother said Colleen's not a deaf person with a
vision impairment. And she's not a blind person with a hearing
impairment. This is a unique set of circumstances requiring a
totally different approach."
The first recommendation the mother made was to
immediately start signing in Colleen's hand. She showed
Colleen how to sign "Mom" and "Dad" and within a few minutes
the toddler was repeating it perfectly to the appropriate
parent.
"It brought tears to our eyes," says Mrs. Salka who came
right home and enrolled in a correspondence course from
California's John Tracy Clinic, a clinic named for actor
Spencer Tracy's deaf son. Everyone in the family started to
learn. And now they speak and sign all the time so Colleen
will always be included.
The helpful mother also told the Salkas that Colleen
needed an intervenor, someone who interprets the environment
for a deaf-blind person. It's what Anne Sullivan did for Helen
Keller, someone to say/sign, "Your mother just left the room
to go make dinner. Your brothers and sister are lying on the
floor doing their homework."
Prior to Jan. 17, when Sharon Napoli was killed by a
hit-and-run driver in a much-publicized accident outside of
Newburgh, she was Colleen's intervenor. Now that task falls to
therapists and Mrs. Salka, which is rough, she says, because
she's usually the one making the dinner or doing whatever
needs interpreting.
Often Maureen or one of her brothers, particularly Brian,
who has not yet started school and is home more, will do that,
especially while watching television together. But Brian's
vocabulary is limited, and an ideal intervenor is more
advanced than the deaf-blind person and can advance her
learning.
But the Salkas are hopeful and propelled by their
unshaken faith. They prayed to St. Lucy, the patron of the
blind, and they were sent a teacher named Lucy who has already
worked wonders with Colleen. In the last six months, her
vocabulary has jumped to about 75 signs with four or five more
added daily. As soon as they ascertain the patron of the deaf,
he or she will be invoked as well.
In the meantime, the Salka's network of saints in Canada,
Mexico, Oregon, Colorado, Kansas--invoked through the phone
calls that average $270 a month--regularly quell fears and
lead their way.
"I was concerned recently that Colleen still needs a
walker to get around, or, for long distances, a wheelchair
(which her siblings all fight for the chance to push,)" Mrs.
Salka says. "One mother, who has a son who is only blind, told
me he didn't walk until he was 4. I figured, OK. We're getting
there. We can do this.'"
For more information on deaf-blindness, call the National
Federation of the Blind at (410) 659-9314.
Changing Your Child's World With The Power Of Music
by Linda Zani Thomas
Bethany* trails her hand along the wall as she hesitantly
enters the music room. She drops to her knees and swings her
head side to side--the stereotyped movements of an autistic
child on unfamiliar turf.
She stops, focuses, and listens open mouthed to Jill
Buchanan's first notes on the piano. Music Therapy has begun.
Through music therapy emotionally and mentally challenged
children like Bethany can break away from behaviors that keep
them at arm's length from others. Music creates a safe
environment, stimulating and encouraging children to seek
intimacy and communication.
Angelo* hovers over the tambourine, his fingers
alternately first stretching out and down then drawing back
into fists. Although he can't see the tambourine due to his
visual impairment, he knows it's there by the hint of a jangle
as John shimmies it just below his fingertips.
He pats the tambourine once, open palmed, then twice, and
smiles with satisfaction and pride.
Music therapy can help children with visual and physical
impairments transcend tactile defensiveness. Using their own
range of motion--no matter how limited--children with cerebral
palsy can push themselves to develop fine motor skills.
Music therapists Jill and John Buchanan were honored
guest presenters at the New Jersey Parents of Blind Children
meeting in March. They explained the basic tenets of music
therapy and goals. It helps children:
develop self-esteem;
increase impulse control;
improve language development; and
increase attention span through focused activity.
And it really works! My daughter--who is visually,
physically, and mentally impaired--attended music therapy for
four years, and we largely credit the program with helping her
make sense of her environment, start to speak, and overcome
her tactile defensiveness.
I recommend two clinics that are accessible to New
Jerseyans. My daughter attended both, with most of her therapy
completed at Nordoff-Robbins. Each private session was one
half-hour. Group sessions are also available.
Nordoff-Robbins Music Therapy Clinic
Carol and Clive Robbins pioneered improvisational music
therapy and have published numerous papers on the subject and
traveled worldwide demonstrating their techniques. They have
a clinic in New York City at 26 Washington Place (near New
York University in Greenwich Village). They can be reached at
212-998-5151.
The Music Therapy Clinic
John and Jill Buchanan were trained at the
Nordoff-Robbins Music Therapy Clinic in Manhattan and have
over seventeen years of combined experience working with
handicapped children. Their Music Therapy Clinic is located at
One Station Plaza in Ossining, New York (914-944-9404), about
45 minutes from North Jersey. They have also given group
therapy sessions at schools in New Jersey.
* Fictional names.
Book Review
A Girl's Best Friend
by Harriet May Savitz
* Review by Peggy Chong
Editor's Note: The following is reprinted from the Fall,
1996, Minnesota Bulletin, a quarterly publication of the
National Federation of the Blind of Minnesota.
Last summer at our 1996 NFB National Convention in
California I purchased a book about a blind girl at a booth in
the exhibit hall. It was a paperback meant for sighted
children in about the fifth or sixth grade and up. The book is
entitled A Girl's Best Friend, by Harriet May Savitz.
There is so little for blind or sighted children to read
that presents blindness in a positive fashion so I was not
sure if this book would be much better than anything else. But
since it was only $2 I decided to purchase it, read it, and
find out.
The story centers on Laurie, a 12-year-old blind girl,
and her dog. No, not her guide dog; the family dog, who is
getting old and may have to be put to sleep. Laurie is a
normal 12-year-old, with all the problems, hopes, and dreams
of any child that age.
Laurie needs to find a way to earn a little extra money
to help pay for the large vet bills if she wants to save her
dog. She gets a job at a bike store. Laurie wonders why the
owner does not say anything to her about her blindness. She
then finds out that he is blind also.
Laurie uses a white cane, writes letters to her
grandmother (with her slate and stylus), roller skates, and
walks her dog just like all the other kids in her
neighborhood. She also has problems in her new school with a
substitute teacher who does not understand how to treat the
blind student.
Laurie has some uncommon ideas for solving her problems
with her teachers. She reins in the school bully, makes new
friends, solves her problems with the substitute teachers (and
in the process, creates different problems for herself) and,
about the dog--well, you'll have to read the book to find out.
The book shows how, for those who are blind, attitudes
about blindness play an important part in the success of
everything in life. Laurie has to work through her own
attitudes about herself when others treat her differently
because she is blind.
This book has a lot packed into its 105 pages. I plan to
give each of my nieces a copy of the book for Christmas. It
will help the younger members of our family grow up with a
better philosophy about blind people.
If you are wondering, as was I, how such a book with a
good approach to blindness could be written, I noticed that
the book is dedicated to the editor of Future Reflections,
Barbara Cheadle, and to Serena Cucco, the blind daughter of
Carol Castellano, the president of our NFB parent's division
in New Jersey. You can have a copy of the book too. Just ask
your local bookstore to order it, or write directly to the
publisher: Scholastic Inc., 555 Broadway, New York, NY 10012.
By the way, the book costs $3.95 in the bookstore. The
NFB National Convention has some great bargains, doesn't it?
Editor's Note: The book has also been Brailled and
recorded by the Library of Congress, National Library for the
Blind and Physically Handicapped. Check with your regional
library for the blind for a copy. My regional library,
however, had the title listed as Girl's Best Friend instead of
A Girl's Best Friend, but it was the same book.
These Canes Are History
by Patrick Barrett
Reprinted from the Winter, 1996, issue of the Minnesota
Bulletin, the newsletter of the NFB of Minnesota.
Minnesota Bulletin Editor's Note: Our Metro Chapter of
the NFB of MN held an essay contest on how the National
Federation of the Blind has changed lives. This is the winner
of that contest:
Any cane-using Federationist will tell you: one loses
count of the many canes one goes through in an active life.
Mine have been involved in car accidents where a hungry door
has snapped its life short. Other Federationists, while
rushing off to convention meetings or parties, have
involuntarily abducted my cane. I must confess, I have been
guilty of the same misdemeanor. Those canes are now, as they
say, history.
My history with the cane began when I was a sophomore in
high school. I was legally blind, and no one had suggested to
me that I should use a cane, not even my itinerant teacher
from the Idaho School for the Blind. One cloudy day, while
crossing the street on my way to school, I did not look
carefully enough. A car, not going very fast, bumped me over
its hood down to the pavement. I was not really hurt, but was
badly shaken.
I went to traffic court. The judge asked me how fast I
had been going. My mom said, "Your Honor, Pat is legally blind
and does not drive." The judge did a double-take and looked at
the officer, who nodded. I was found negligent, and the judge
"sentenced" me to use a cane--for life. That was one of the
best things to happen for my independence.
I attended my first NFB National Convention in Chicago in
1975. No longer was I using my aluminum fold-up cane that
would at times fold-up while I was crossing the street. I was
carrying my straight, solid Rainshine cane. I got this cane
when I attended the orientation training center at the Idaho
Commission for the Blind. I still use this cane when I want to
"rough it."
Anyway, the NFB Convention was my first significant
exposure to blind people. I marveled at how Frank Smith, Norm
Gardner, and hundreds of others swiftly got around using their
canes. One realization hit home during this fast-paced
enlightening week of activity: All these blind people were
working and raising families as if this was just the most
natural thing in the world to do. I decided then that I would
no longer regard my blindness as a "barricade" or consider
myself courageous for trying to go around this barricade. I
was relieved with the revelation that blindness was simply a
part of me. It was no more noteworthy than my brown hair.
The summer of 1980 saw some serious pavement pounding. I
was now using the 59-inch hollow fiberglass cane. The end of
June was my first NAC tracking expedition in Boston. 95
degrees and 95 percent humidity didn't keep us
(Federationists) from carrying picket signs and distributing
flyers. I was handing out flyers in front of the NAC meeting
place. One passerby wanted several, but I was suspicious he
might be a NAC-ster. I just gave him one.
From Boston I went to Minneapolis to the NFB National
Convention in July. I met Trudy there, and we married in
August of 1979. Later we returned to Minneapolis and our canes
tapped together down Hennepin Avenue with hundreds of other
Federationists toward the Minneapolis Society for the Blind
(MSB). We were protesting MSB's refusal to allow fair
representation of the blind on its board. Joyce Scanlan, armed
with a megaphone, was demanding that Jessie Roston come out
and listen to the largest organization of the blind. Our canes
were trumpets, tapping a chorus to topple the walls of old
outmoded, paternalistic ideas.
Another outmoded idea is that blind kids shouldn't use
canes until they are older. I believe that blind kids should
use canes from the moment they start walking. At our 1992 NFB
Convention in Charlotte, I smiled to see all the toddlers
using canes.
At that same convention I lost my cane while holding an
elevator door open for several people. I must have positioned
my cane just wrong and, whoosh, down the shaft it fell. That
cane was history. Looking back, I guess it was callous of me
not to give a short eulogy over my thin white friend.
Next day, over my grief, I visited Jerry Whittle at the
cane table in the exhibit hall. Jerry still teaches at the
Louisiana Center for the Blind. I asked him for a 61-inch
cane. In his smooth, southern, salesman voice he said, "Why
don't y'all try a 63. It'll give you more notice and y'all
walk faster." I was skeptical because the dang thing almost
touched my nose. After two weeks of testing, however, I was
sold on it.
Russell Anderson, my travel instructor at BLIND, Inc.,
paired me with a 65-inch cane in 1993. It was with me during
travel routes, rock climbing, and canoeing. (Though in the
last case we both--my cane and I--went overboard). Thanks to
Coach Dan Harman we realized the thrill of victory after muddy
feet.
In 1987 Trudy and I adopted our daughter, Raeann. Raeann
has learned from infancy that mom and dad's canes are ways to
get our family to the zoo, church, or the library. One time
when Raeann was three the librarian asked her, "Are you a big
help to your mom and dad?" Raeann's reply was immediate and
firm, "My mom and dad help themselves."
Dr. Jernigan taught us in his banquet address,
"Blindness: Is History Against Us?" about Zisca and other
great blind leaders throughout world history. Their dreams and
drive made them leaders. In my NFB history, many sighted and
blind role models have inspired me to go for the goal of
independence. I no longer strain to see the ground. With cane
in hand and head held high, I view the future with optimism.
That's the bright baton of understanding I want to pass on to
blind and sighted citizens.
Hear Ye! Hear Ye!
Braille Literacy Provisions
Now Part Of Federal Law
On June 4, 1997, President Clinton signed the Individuals
with Disabilities Education Act (IDEA) Amendments of 1997 into
law as public law 105-17. This law contains a provision
specific to Braille instruction for blind and visually
impaired children. This provision marks a major victory in the
battle for Braille literacy. As a result of the law, every
blind and visually impaired child's IEP should begin with
Braille included. The decision to be made by the team is on
"ruling out" rather than "ruling in" Braille. It is
significant that the law uses the word "provide," rather than
"consider the need," for Braille.
Here is the pertinent section from the IDEA Amendments of
1997. Portions of other items in the same section with the
Braille provision are also printed so you can compare the
language. Also printed is the section which, also for the
first time in federal law, refers to orientation and mobility
services:
Amendments to the Individuals with
Disabilities Education Act of 1975
Section 614 (d)(3)(B)(iii)
(B) Consideration of Special Factors.--The IEP Team
shall--
(i) in the case of a child whose behavior impedes his or
her learning or that of others, consider,...
(ii) in the case of a child with limited English
proficiency, consider,...
(iii) in the case of a child who is blind or visually
impaired, provide for instruction in Braille and the use of
Braille unless the IEP Team determines, after an evaluation of
the child's reading and writing skills, needs, and appropriate
reading and writing media (including an evaluation of the
child's future needs for instruction in Braille or the use of
Braille), that instruction in Braille or the use of Braille is
not appropriate for the child; [emphasis added]
(iv) consider the communication needs ...
(v) consider whether the child requires assistive
technology devices and services.
Section 602 Definitions (22) Related Services.--The term
'related services' means transportation, and such
developmental, corrective, and other supportive services
(including speech-language pathology and audiology services,
psychological services, physical and occupational therapy,
recreation, including therapeutic recreation, social work
services, counseling services, including rehabilitation
counseling, orientation and mobility services, and medical
services shall be for diagnostic and evaluation purposes only)
as may be required to assist a child with a disability to
benefit from special education, and includes the early
identification and assessment of disabling conditions in
children. [emphasis added]
FUTURE REFLECTIONS
the National Federation of the Blind
Magazine for Parents of Blind Children
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