to be the clearest on the market today. The caller can choose
from the entire range of DECtalk voices and can control the speed
of the reading.
Of course, technological breakthroughs like this one do not
just happen. The concept of using speech synthesis to satisfy
listener preference and news timeliness for a consistent reading
voice has been talked about for quite some time. In fact, the
National Federation of the Blind has for a number of years
discussed establishing a pilot project to test the feasibility of
applying the synthetic speech technology to the problem of timely
access to news. In recent months the NFB has joined forces with
the National Center for Accessible Media (NCAM, pronounced "en-
cam"), a creation of WGBH Public Radio and Television in Boston,
to bring the project to fruition.
From the start it was obvious that the National Center for
the Blind in Baltimore had ideal space and capacity to house the
project. The NFB staff could also provide necessary advice and
support during the difficult early days. So the most pressing
problem was to select the appropriate newspaper, one that would
be able to provide its files in a form which could be easily
downloaded and used by the NEWSLINE computer. It was USAToday
that was eventually chosen to be the first newspaper in the world
to be made available to the blind in the form of synthetic
speech. The senior staff of USAToday have been extremely generous
in supporting the project and have arranged to make available the
entire text of the paper rather than an abbreviated version.
There are always difficulties in completing a project like
the NFB/WGBH digitized newspaper. Software had to be written to
instruct the computer what to do with the downloaded text to
prepare it for reading by the speech synthesizers. Bugs still pop
up from time to time, and the four phone lines currently
available to users are not always adequate to meet the demand.
But such things are to be expected, and the difficulties are
being solved one at a time.
So far the response to the experiment has been extremely
positive. The National Federation of the Blind conducted a press
conference to announce the project on Tuesday morning, August 16.
Several television crews as well as other reporters were present,
and when the news hit the airwaves, the volume of telephone
inquiries was an avalanche, generating numerous interviews and
television appearances. The Associated Press put the story on its
wire, and it was picked up across the country. Here is the
article that appeared in USAToday on August 17:
For the blind, USAToday by Phone
by Tim Friend
The National Federation of the Blind and USAToday
are teaming up to offer the newspaper to the blind--
read aloud over the telephone by voice-activated
computer.
USAToday, published by Gannett Co. Inc., feeds the
text of the paper at 6:15 a.m. ET from its headquarters
in Rosslyn, Va., to NFB offices in Baltimore. Callers
can hear the paper by 6:30 a.m.
The service, which was started Monday, is "the
first of its kind anywhere in the world," says Marc
Maurer, NFB President, although some other newspapers
are available on tape via telephone later in the day.
An automated computer system offers the listener a
choice of sections and stories. Listeners can hear all
stories in sequence, skip stories and speed up or slow
down the pace of the reading.
"The caller has complete flexibility as to the
time and which portion of the paper they want," Maurer
says.
Maurer expects the system to be "overwhelmed"
until its computer system can be expanded and phone
lines added, which he expects to take place in October.
NFB also will attempt to raise money to make the
calls toll-free for people beyond the
Washington/Baltimore calling area.
The project is co-sponsored by the CPB/WGBH
National Center for Accessible Media. USAToday is not
charging for use of the paper.
Those who want to receive the paper by telephone
must register and obtain a special access code through
the National Federation of the Blind.
Many questions remain to be answered. Chief among them is
the question of funding for nationwide coverage. If money cannot
be found, our new approach to newspapers for the blind in
computerized speech will have to be reconsidered. Meanwhile, we
are in a position to make choices, and the National Federation of
the Blind is pioneering in a new field of technology for the
blind.
IN SEARCH OF GOOD EDUCATION
by Gene Hunter
From the Editor: When I was growing up in the southern
suburbs of Pittsburgh, we all secretly envied the kids who
attended school in Mt. Lebanon. It was an unabashedly up-scale
community with excellent schools and an undefeated football team.
Its administrators, teachers, and students were all quite certain
that they were better than their competition, and they were
usually right. The rest of us detested them.
The danger in being very good at most things is that it is
hard to conceive that you might ever be mistaken, uninformed, or
even wrong about anything. The following article is the chronicle
of the way in which an arrogant school system came close to
destroying a child and his family because its officials were
uninformed about the real problems and possibilities involved in
educating blind children. The youngster in question is Jeremy
Hunter, who finally enrolled last year at the Ohio State School
for the Blind and is a senior this year at the school in which
his sister teaches. The father and author of this article is Dr.
Gene Hunter, and the school district is Mt. Lebanon,
Pennsylvania. Here is the story as it appeared in the April,
1994, edition of The Blind Activist, the publication of the
National Federation of the Blind of Pennsylvania. It begins with
a note from Ted Young, President of the NFB of Pennsylvania. Here
it is:
"I believe we have experienced every failure and shortcoming
of the educational system during our battle for Jeremy. Recently
some changes have been implemented for teachers of the visually
impaired in Pennsylvania. These include a conference on
functional assessment and one on selecting appropriate reading
media. However, these are not nearly enough. Many of the teachers
in Pennsylvania are not qualified to teach blind and visually
impaired children. Until there are competency requirements such
as those being worked on in Texas, our children will continue to
suffer the consequences of bad teaching. I know it takes time to
bring about change, but this state lags behind many others in the
country." So said Gene Hunter to me in a letter dated May 30,
1993. The following is an article written by Dr. Hunter outlining
the disaster that shaped these views and feelings:
Imagine a child so afraid to go to school that he becomes
physically sick or bursts into tears in the middle of his school
classes for no apparent reason. Imagine that same child so
traumatized by the school environment created by indifferent and
incompetent school personnel that he threatens to take his own
life. This was the condition of our son Jeremy in the seventh
grade in October, 1989. He had dealt with these fears for five
years during his education in the Mt. Lebanon, Pennsylvania,
School District.
Jeremy had seizures at birth, requiring three weeks in the
neonatal intensive care unit. The doctors informed us of Jeremy's
vision problems within his first month of life. He had useful
vision and was mainly affected by strabismus, amblyopia, and
ptosis of the left eyelid. Later he was diagnosed as having
nystagmus. More recently, field losses in the lateral and
inferior fields have been identified. Two eye muscle surgeries
were required in 1982 and 1984. His visual acuity is extremely
poor in the left eye (20/1000). Under optimum conditions acuity
in his right eye can be measured at 20/50 with best correction.
The Mt. Lebanon School District is affluent and has a
national reputation for excellence in the education of non-
handicapped children. We made the mistake of thinking this same
reputation would apply to the provision of a quality education
for Jeremy. What a mistake!
As a partially sighted student, Jeremy is entitled to
individualized appropriate education under the Individuals with
Disabilities Education Act (IDEA). Although he was enrolled in
special education in the Mt. Lebanon schools, his program was so
inappropriate that it caused irreparable damage to Jeremy's self-
esteem and academic capabilities. But what can parents do when
confronted with an adamant, autocratic school system?
We pointed out to the District that Jeremy should be
evaluated for special education services before he entered first
grade in 1983. With this information the District went about
developing an Individualized Education Program (IEP) for Jeremy.
We were not given any information as required by law. No multi-
disciplinary team evaluation (MDT) was done except for the eye
doctor's report. We were invited to an IEP meeting at which the
document had already been filled out. We strongly received the
message that "Jeremy is not so bad compared to other children in
the program."
Throughout his elementary years these same procedures were
used, violating federal and state statutes. Jeremy never had a
functional vision exam, was never evaluated for social skills or
self-esteem, and was never evaluated for independent living
skills. Whenever we pointed out Jeremy's problems in school, our
concerns were always discounted with statements like: "He's fine;
he's just hard on himself." "We have a lot of kids who are worse
off than Jeremy." "We don't expect him to do as well as kids who
have good vision."
Jeremy was never given an understanding of his vision loss
and its impact on academic performance and daily living skills.
Instead he came away thinking that he was dumb and that nobody
liked him. We needed to take him to a psychologist to deal with
his emotional reaction to the fear of losing the rest of his
vision, his lack of self-esteem, and his poor social skills.
Finally, when Jeremy was unable to keep up in school and was
falling apart emotionally, we began to read to him and teach him
ourselves, enabling him to pass from grade to grade. Although he
was passed through the school system, his skills were falling
further and further behind.
By seventh grade everything came to a head. We obtained an
independent functional vision evaluation through our daughter, a
teacher of the visually impaired in Illinois. We presented it to
the district, which ignored it. Jeremy was on the verge of a
breakdown, trying to cope with his lack of adaptive techniques
and the school's advanced curriculum. We had to make a decision
quickly.
Faced with this dilemma, we withdrew Jeremy from the public
school and enrolled him in a small, private school--not one for
blind/visually impaired students, but one with a small pupil-to-
teacher ratio and individualized attention. This was October,
1989.
This was the point at which the battle really began. We knew
nothing about special education. What we did know about Jeremy's
needs came from our daughter. Services that we requested at our
daughter's suggestion had been ignored by the elementary school
teachers of the visually impaired. Since we were never given any
information by the district--nothing about MDTs, nothing about
the essential elements of an appropriate IEP, nothing about
procedural safeguards--we could not take competent action. The
district treated us as if they were growing mushrooms--they kept
us in the dark and fed us a lot of manure.
At the suggestion of my daughter, we filed a complaint with
the Pennsylvania Bureau of Special Education Compliance Division
in January of 1990. We were naive enough to think the state
investigator would help us and Jeremy. No way! Without even
talking to us--parents who had filed the complaint--the
investigator merely rubber-stamped the district's practices. One
wonders why it took a full six months for that official to wield
a rubber stamp, but the decision was not issued until July of
1990.
Meanwhile we tried to communicate with the special education
administrators at the district. Our three-page letter detailing
all of Jeremy's problems was given a one-sentence response.
Predictably that response stated that the program for Jeremy was
appropriate.
Our attempts to continue to get mandated services for Jeremy
met with little success, despite the law. We could get no
cooperation. Letters went unanswered. Our concerns were ignored.
Finally, after dogged perseverance, we were able to get a new
"MDT evaluation" in November, 1990. Nothing changed. The same
inadequate programming was proposed. The district refused our
request for mediation.
We wrote a letter to the Superintendent of the district
informing him in detail of all that had gone on and gave him
complete documentation. In a subsequent meeting he said that
everything the school district was doing, or failing to do, was
acceptable.
Left with no alternatives, we requested a due process
hearing. Although we already felt that the State was incompetent
in the compliance investigation, little did we know how poorly
the State of Pennsylvania meets its legal responsibilities for
due process hearings. The only thing that stopped this process
from being another disaster was the good fortune that the hearing
officer assigned to the case had an educational background in
teaching visually impaired students.
A due process hearing is supposed to be an informal fact-
finding hearing to determine appropriate programming for the
student. Annoyed by this challenge to its authority, the district
turned this informal hearing into a full-scale trial. Rather than
being concerned in any way for Jeremy's needs, the district used
every dirty trick in the book to try to win the case. The
following list summarizes the tactics used by the district at the
hearing:
■ The district accused Jeremy of being a sandbagger regarding
his disability, claiming that he purposely faked its
seriousness to get services he did not need.
■ The district stated repeatedly that we made up Jeremy's
problems in order to "continue a history of unwarranted
attacks on the school district," while being unconcerned
about Jeremy's welfare.
■ The district was totally unaware that they are obligated
under the IDEA to provide counseling to children with
disabilities. Because we requested that the district provide
counseling for Jeremy as required and asked for
reimbursement for the previous counseling we had provided,
the district attacked our personal life.
■ The district fabricated stories about our personal and
family life, stating on the record that "Dr. Hunter had left
the family, abandoning his wife and child for another
person, that the father wanted nothing to do with Jeremy,
that Dr. Hunter blamed Mrs. Hunter for having a child that
was not perfect, and that the problem with Jeremy was a
family problem caused by Dr. Hunter."
The reader should note that no one from the district had
ever met our family or had contact with us except at school. (By
the way, you should know that unethical attorneys and witnesses
can do this kind of thing because they have immunity. They can
lie, make up stories, use histrionics, anything to win the case.)
■ The district mischaracterized informal conversations between
the hearing officer and our witnesses during breaks at the
hearing to accuse the hearing officer of bias. This repeated
attack on the hearing officer, along with repeated
interruptions and objections, wrested control of the hearing
away from the hearing officer and disrupted the focus of the
hearing away from Jeremy's needs.
■ Even before Jeremy's counselor testified, the district
harassed her, requesting subpoenas of her records of her
work with Jeremy or any other family member. Every time the
counselor appeared at the hearing, the district interrupted
the hearing to question her about her records. When the
records were produced, the counselor was accused of
destroying her originals.
■ One of our witnesses, a teacher at the University of
Pittsburgh who prepares teachers to work with blind and
visually impaired students, had done a functional vision
exam of Jeremy in April, 1991, and worked with him on
development of needed skills from that point on. She
received two phone calls before her appearance at the
hearing, telling her not to testify. Since her testimony she
has been continually harassed by fellow teachers in the so-
called vision community. In fact, she will no longer even
talk to us about Jeremy.
■ The above-mentioned witness also did an orientation and
mobility evaluation. Jeremy was shown to be at high risk for
traveling unsafely, especially in novel settings and busy
intersections. The district countered with reams of
testimony by two of its allegedly expert teachers of the
visually impaired that Jeremy didn't need O & M instruction
because he didn't run into walls or fall down stairs; he
could walk to school without being hit by a car; he could
ride a bike on his own street; and he even went ice skating.
In the eyes of the district, blindness and visual impairment
obviously equate with helplessness.
The district used every possible tactic to prolong the
hearing. There were over 3,500 pages of transcript. The hearing
started in October, 1991, and lasted seventeen months. The law
requires these hearings to be completed in forty-five days so
that the student doesn't suffer from program deficiencies. The
cost of the hearing to us was $95,000 in attorney fees and expert
witness fees.
The hearing officer took five months to write up her
decision. During all this time the only services Jeremy received
were those we could coordinate and deliver. As time passes, the
skills that Jeremy needs become harder to acquire, and we are
afraid that he will give up and drop out, becoming a casualty of
the system.
The hearing officer's decision included 137 findings of
fact. All were in our favor! The District was found to have
violated federal and state statutes for MDTs and IEPs and to have
failed to provide programming to meet Jeremy's individual needs.
(This, of course, was in direct contradiction of the Compliance
Division investigation mentioned earlier.) However, the decision
gave us few remedies. It failed to spell out any programming
details for Jeremy that would prevent continued abuses by the
district. Instead, the decision left the programming to a future
IEP meeting between the district and us. Tell me, if you were a
parent, would you trust the school personnel after their callous
conduct and their personal attacks on Jeremy and us?
We filed an appeal to the Pennsylvania State Appeal Panel,
where once again we encountered the endorse-it-right-or-wrong
mentality. The panel did not even review the transcript. They
merely rubber-stamped the hearing officer's decision.
In the appeal the district argued that it was impossible to
make Jeremy's skills equal to those of a student who does not
have a visual handicap. The appeal panel agreed with the
district, endorsing the mistaken and prejudicial conception held
by many people that being blind or visually impaired is
synonymous with inferiority.
We still have no remedy for Jeremy. Our next step is to go
to federal district court with a lawsuit against the Mt. Lebanon
School District and the Commonwealth of Pennsylvania.
In conclusion we want to say a word about the National
Federation of the Blind. In 1991 our daughter told us about the
NFB. We contacted both the National Office and the Pennsylvania
affiliate under Ted Young. The information and moral support we
have received from the NFB have been extremely valuable in
helping us to learn about blindness and things we can do to help
Jeremy achieve independent living skills and especially in
showing us that we are not alone. The NFB has been engaged for
decades in the battle we are fighting. Only through joining
together with a common purpose will parents and blind people
effect the changes our children must have.
At this point in our experience, what would we recommend to
other parents of blind or visually impaired children?
1. Become informed! Learn the basics of the Individuals with
Disabilities Education Act. Join the National Federation of the
Blind and make use of NFB information and experience. Make
contact with others in the NFB, for both your child's and your
own growth and development. Come to know that you are not alone
and that there are support and strength in the shared experiences
of others.
2. Develop a partnership with your school district. Learn to
communicate as an equal partner in identifying your child's needs
and in implementing appropriate programming. You cannot
compromise in areas that are critical to your child's development
of independence.
3. If you happen to be confronted with an autocratic,
arrogant, and inflexible school district, as we were, you must be
willing to do all it takes to bring about change. Try to
communicate. Use all available avenues of nonconfrontational
strategies. Use mediation. Use publicity. If all else fails, use
the legal system as a last resort.
[Photo: Peggy Elliott sits at a table, smiling, reading Braille. Caption:
Peggy Elliott]
FAA GIVES THUMBS-UP TO RECORDERS IN FLIGHT
From the Editor: Anyone who flies much is aware that the
airlines are all bureaucracies--you don't have to be a government
to be a bureaucracy. And to make matters worse, the airline
bureaucracies are regulated by a real government bureaucracy, the
FAA (Federal Aviation Administration). Blind people have been
caught in this double bureaucracy time and again. The most
glaring example is the instance of the white cane. Federal
regulations specifically permit blind passengers to stow the cane
by their seats while the heavier orthopedic canes used for
support in walking must be stowed elsewhere. Even today, after
all the publicity surrounding the issue, blind people encounter
flight attendants who insist that they must take the cane. Wrong,
but it's the kind of confusion that occurs in a bureaucracy
regulated by a bureaucracy.
In the last several years a similar instance of
overzealousness has arisen in the case of devices thought to
interfere with aircraft navigational equipment at low altitude.
Flight attendants instruct passengers to turn off equipment for
the first and last ten minutes of every flight. This instruction
has seemed odd to many blind people who have used portable tape
recorders in airplanes for years without incident. But, when the
person in the uniform in charge of the plane gives an order,
anyone has to think carefully before refusing and must be willing
to take the consequences of that decision. Those ten minutes
don't seem like a fighting issue; the situation just seems
irritatingly wrong and frustratingly inconvenient.
At President Maurer's request, Second Vice President Peggy
Elliott wrote to the FAA inquiring about the ten-minute rule.
Surprisingly, the response was swift and clear. As you will see
from the enclosed correspondence, the FAA does not ban use of
portable tape recorders at all. The official who wrote the
response does go on to caution that individual airlines may have
their own stricter rules. But, as we in the Federation know,
changing the world happens one step at a time. Let's begin by
straightening everybody out on who is doing the regulating. It is
not the federal government. Then, if airlines want to insist on
prohibiting the use of cassette playback machines at the
beginnings and ends of flights, let them justify the ban by
producing some actual evidence.
But wait. Haven't we been here before? Asking for evidence
and never receiving it--instead getting only the statement that
the practice in question is obviously not safe. Well, let's see
what the airlines say. And in the meantime here is Mrs. Elliott's
letter to her Access Board colleague, Ira Laster of the
Department of Transportation; the full response she received from
the FAA; her subsequent note to Anthony Broderick, the official
who wrote the response; and finally her letter on the subject to
American Airlines.
Grinnell, Iowa
July 15, 1994
Ira Laster
U.S. Department of Transportation
Washington, D.C.
Dear Ira:
I am writing you this letter with the request that you pass
it along to the appropriate authorities for consideration. As I
have mentioned to you, this may seem a small item to a busy
safety administrator, but it's a continual disruption for people
who are blind.
The problem is the new rule on electronic devices. At the
outset, let me say that neither I nor any other blind person is
interested in endangering the safety of aircraft in flight. We
are aboard. We want them to function properly. But application of
the new rule to our cassette-tape battery-operated low-voltage
playback machines used for reading seems excessive.
As you probably know, blind people read by using tapes.
Though Braille is a primary reading medium, it is bulky to carry
on trips if one is a serious reader. Much more can be contained
on a few cassettes and a Walkman-type machine modified to play
slowly to get more on the tape. We have used these machines on
airplanes for twenty or thirty years now, ever since portable
tape machines were available, and long before Walkmans became
popular with the general public. I am not aware of anything that
suggests they emit interfering radio waves or could cause
interference with aircraft systems. The common type uses two AA
batteries and is similar to a Walkman.
The new rule against use of electronic equipment during the
ten-minute periods immediately after take-off and immediately
before landing, as I understand it from the press reports, is a
sweeping one since the exact source of the interference is not
yet well identified. Different carriers read different lists of
prohibited items, but they all bar CD players, computers,
calculators, and Game Boys for the ten-minute periods in addition
to the absolute bar on cellular phones and radios. It seems to me
that all these devices are chip-based, which, of course, our tape
players are not. In addition, they use the word "electronic" to
describe the category of unusable equipment. Though I have always
been hazy on the difference between "electronic" and "electric,"
it seems to me that there must be a difference in power (chips
and more radio waves versus low-voltage non-chip technology) and
consequent emissions. This intuition would seem to be borne out
by the fact that we have used our equipment without incident for
so many years.
It doesn't seem to be our players. Yet I am routinely
(sometimes even politely) ordered to take off my earphones. Not
all the time, but so often that I just don't attempt to read on
planes, which is a huge inconvenience to me. The general public
using small Walkmans is equally inconvenienced, but they are able
to read print while listening and so are able to read during the
ten-minute bar. This is the only way I can conveniently read, and
it's now barred to me in a way that seems to be a too-sweeping
application of a very necessary rule.
I request that this little corner of the no-equipment rule
be considered and that an interpretation be issued for us to use
on planes when our use of tape players is challenged. I have no
particular hope that this small sub-issue will be important to
administrators who are understandably and correctly concerned
with locating the culprit in these strange interference episodes.
I merely have a glimmer of hope that there will be on file
somewhere a clear distinction between our small machines and the
chip-based ones that will be the basis for someone to say: Of
course. Blind people can obviously use those machines. They're
not suspects.
If that's possible, it will return us to the status quo
ante, while continuing to prohibit the correct class of suspects.
Without such a letter, we cannot back off flight attendants
understandably attempting to do their job in protecting the
safety of the aircraft. To them, earphones mean danger right now.
You can hardly blame them for being rigid; I just hope that we
can establish that their rigidity is better aimed elsewhere.
Thank you for any consideration you can give to my request.
Sincerely yours,
Peggy Pinder Elliott
Washington, D.C.
August 15, 1994
Dear Ms. Pinder:
Your letter of July 15 to Ira Laster has been referred to me
for response. In your letter you discuss the "new rule on
electronic devices" and inquire about the possibility of having
an interpretation that would permit you and others to use
Walkman-type tape recorders during flight and during the times
when other personal electronic devices are not permitted to be
used by the airlines. I hope I can be helpful.
There has been substantial confusion about this issue since
early 1993 when Time magazine, on February 15, published a small
story alleging that an airliner's flight controls had "gone
wacky" when someone in first class had turned on his CD player.
Despite diligent searching, we were never able to validate the
occurrence of that event. Unfortunately, the article set off a
string of new airline-imposed rules restricting the use of these
kinds of devices.
I said "airline-imposed" rules deliberately, because the
rules the airlines have set may not be ones required by the
Federal Aviation Regulations (FAR). In many cases we have found
them to be much more restrictive than we require for safety
reasons. The FAR are quite specific about not being applicable to
"portable voice recorders" (see 14 CFR 91.21 (b)(1), copy
enclosed). I have discussed this matter with the Office of the
Chief Counsel, and they concur with an interpretation of the FAR
that places Walkman-type machines, whether or not they are
configured for voice recording, in the category of voice
recorders that are referenced in 14 CFR 91.21. Accordingly, your
use of your Walkman in flight should not be prohibited for
reasons of safety requirements as outlined in the FAR. Note,
however, that airlines may, for reasons of their own, ban the use
of these or any other devices as a condition of carriage. Any
appeal of such an airline-imposed ban could not be made to FAA,
as we have no authority to require them to permit the use of such
devices. For your convenience I have prepared a separate letter
that you may carry with you to show to airline personnel should
they question you on this matter in the future.
Before closing, I would ask one favor. When the flight
attendants actually present their pre-takeoff safety briefing, I
would appreciate it if you did not use your Walkman, for two
reasons. First, it would appear to preclude your listening to the
briefing. Even though you are a frequent flyer, we encourage
everyone on every flight to pay close attention to the briefing
given. From time to time differences in equipment or procedures
may be presented, and these differences could be important in an
emergency. Second, and perhaps even more important, it sets a bad
example for those who are not frequent flyers to see people
ignoring the safety briefing and tends to minimize the importance
of them paying attention. I would hope that you and other
frequent flyers would understand why we do not want you to set
that kind of example, and I appreciate anything you can do to
help us in our efforts to have people pay attention to the safety
briefings.
I hope the enclosed letter is suitable for your purposes.
Sincerely,
Anthony J. Broderick
Associate Administrator for
Regulation and Certification
Department of Transportation
Federal Aviation Administration
Now here is the letter intended for use with airline
personnel:
Washington, D.C.
August 15, 1994
Dear Ms. Pinder:
You have asked about airlines' prohibiting your use of a
Walkman-type voice recorder or audio tape playback system. The
Federal Aviation Regulations (FAR) do not prohibit your use of
such a device.
Section 91.21 of the FAR (copy enclosed) provides for the
exemption of "portable voice recorders" from the regulations
which restrict the onboard use of portable electronic devices.
This has been so since the rule was first promulgated in the
early 1960's, and we know of no safety reason why such devices
should be restricted today. We are unaware of any electrical or
electronic interference such portable devices could cause.
This letter has the concurrence of the Office of the Chief
Counsel of the Federal Aviation Administration and, as such, may
be considered an official interpretation of the Federal Aviation
Regulations.
Sincerely,
Anthony J. Broderick
Associate Administrator for
Regulation and Certification
U.S. Department of Transportation
Federal Aviation Administration
Enclosure:
91.21 Portable Electronic Devices.
(a) Except as provided in paragraph (b) of this section, no
person may operate, nor may any operator or pilot in command
of an aircraft allow the operation of, any portable
electronic device on any of the following U.S.-registered
civil aircraft:
(1) Aircraft operated by a holder of an air carrier
operating certificate or an operating certificate; or
(2) Any other aircraft while it is operated under IFR.
(b) Paragraph (a) of this section does not apply to--
(1) Portable voice recorders;
(2) Hearing aids;
(3) Heart pacemakers;
(4) Electric shavers; or
(5) Any other portable electronic device that the
operator of the aircraft has determined will not cause
interference with the navigation or communication system of
the aircraft on which it is to be used.
(c) In the case of an aircraft operated by a holder of an
air carrier operating certificate or an operating
certificate, the determination required by paragraph (b)(5)
of this section shall be made by that operator of the
aircraft on which the particular device is to be used. In
the case of other aircraft, the determination may be made by
the pilot in command or other operator of the aircraft.
Grinnell, Iowa
August 19, 1994
Dear Mr. Broderick:
I am sure you don't often get responses to the mere act of
providing information and interpretations. It is in a day's work
to you. But, I must say, the arrival of your letters (copy
enclosed for your reference) was the occasion for great glee.
I did my best to keep my irritation at constantly being
interrupted while reading on airlines out of my letter to the
Department of Transportation, but the irritation is real. It's
good news that the federal government is not the irritating agent
in this instance.
I want to thank you for your swift, precise, and clear
answer to my request. You made one citizen happy, a good deed to
take home.
I'll carry your letter with me and see how it plays. In the
meantime, I am querying some airlines at your implicit suggestion
to see how they react. Education, as we all know, has a large
element of repetition, and repeating that the FAR don't apply
will take a while to sink in.
Anyway, you've given the start, and I'll faithfully follow
your direction until I can read once again in peace on a plane.
Thanks for helping.
Sincerely yours,
Peggy Pinder Elliott
P.S. Apropos of your admonition on listening to safety briefings,
I do. In fact, I note the type of equipment in Braille along with
flight numbers and seat assignments as a means of preparing to
fly. However, I must say that as a blind person I am routinely
(though not always) subjected to a public, condescending,
personalized safety briefing, delivered in those honeyed tones
that indicate the speaker believes he or she is addressing a
ward. These personalized briefings are less complete than the
general announcements and render me nearly willing to punch the
briefer. These unfortunate afflictions are rooted in the FAR
which require personalized briefings for "persons who may need
assistance in the event of an evacuation." If I recall correctly
your testimony at the Senate hearing on exit rows, you would
concede that the category of persons who may need assistance
includes nearly everyone in the passenger load. But I, who do
listen to the general briefings, get a specific one anyway and a
ration of condescension with it. Oh, well. Ad Astra per Aspera.
[to the stars through difficulty]ppe
Grinnell, Iowa
August 19, 1994
Barry Baum, Director
Customer Service Training
American Airlines
Dear Barry:
This letter contains a question and an observation. It also
has enclosures pertinent to the question. I hope that you can
respond quickly and favorably to the question. Such a response
would help.
As you will see from the enclosed correspondence, I have
been bothered in recent years by flight attendants' requiring me
to stop reading books on tape by using an ordinary Walkman-like
tape recorder, in apparent enforcement of the safety rule about
computer emissions near to takeoff and landing. I wrote to the
Department of Transportation asking if this was necessary. I
received an amazingly clear and definitive response to the effect
that the Federal Aviation Regulations (FAR) do not prohibit me
from reading in flight. However, Mr. Broderick goes on to state
that airlines may impose more stringent requirements about which
FAA can do nothing.
My question is this: Does American Airlines prohibit the use
of portable tape recorders in the periods near takeoff and
landing, even though the FAA does not? If American does have such
a prohibition, I would be grateful if you could provide an
explanation of the basis for it. If American has no such
prohibition, I would be grateful if the company could provide me
with a letter to carry and show to American flight attendants who
may inadvertently enforce the company policy too broadly.
You see, either way, I can be rendered grateful. The only
way to avoid this gratitude is to omit answering. I am sure that
you will not choose that course.
Now, for the observation. Being prevented from reading at
the beginning and end of every flight is an irritation for blind
travelers. Sighted travelers are not similarly disrupted in their
chosen occupations, assuming those occupations involve printed
materials rather than computers. We all grudgingly comply since
the order to stop reading seems official and we have all had way
too much hassle with flight attendants over what we know they
erroneously enforce. Canes come to mind. One still periodically
gets into quite a discussion over an attendant's insistence that
he or she must take the cane. The reg is quite specific that our
white canes are stowable at the seat; orthopedic canes are not,
and many flight attendants remember that far in their training
without remembering the exception for the blind.
Likewise, many of us have intuited that our portable tape
recorders cannot be covered by a safety rule since we have used
them for years and years without incident, long before sighted
travelers had Walkmans for music. But it seems ludicrous to
hassle over ten minutes. So our flights are disrupted while those
of other passengers with their chosen reading material are not.
My point is that this set of circumstances is specific to
blind travelers. If an airline official were assigned to provide
training and guidelines for handling all disabled passengers,
this continual irritation for blind travelers would be missed
since it is disability-specific.
I have admittedly transited from observation now to
advocacy. Solving this low-level but constant irritation for
blind travelers provides for us an atmosphere in which we are
welcomed and in which our alternative techniques are not made the
occasion for inadvertent or unthinking hassles. Instead, tape
recorders don't need to be included, according to the FAA. Can
American Airlines get its people to lighten up and also give us
blind travelers a letter like Mr. Broderick's to use when the
flight attendant is misprocessing?
I hope the response can be favorable and expeditious. If
not, as you know, I'll be happy to advocate further on the
subject. In any case, I'll look forward as always to hearing from
you.
Sincerely yours,
Peggy Pinder Elliott
There you have the correspondence. Now there is nothing left
to do but wait to see how one airline, at least, is prepared to
respond. We will keep you posted.
AN AVERAGE AMERICAN
by Nancy Martin
From the Editor: The following article is reprinted from the
Summer, 1994, issue of Future Reflections, the quarterly magazine
of the National Organization of Parents of Blind Children, a
division of the National Federation of the Blind. I was lucky
enough to have been invited to attend the NFB of Washington's
spring mini-convention, and one of the high points of that
meeting was an address presented by Nancy Martin of Vancouver.
Nancy had first delivered these remarks at a parent seminar. It
is because of the hard work of such people as Nancy that the
National Federation of the Blind is changing what it means to be
blind. Here is the Future Reflections article, beginning with
Editor Barbara Cheadle's introductory note:
"The average blind person is able to perform the average job
in the average career or calling, provided he or she is given
training and opportunity." This is one variation of a phrase
commonly used by the National Federation of the Blind to describe
our philosophy about blindness. Possibly the one part of that
credo that arouses the most skepticism among members of the
public--including parents of blind children and the blind
themselves--is the part about the "average" person. Can the truly
average blind person really have a complete, full, normal, and
successful life? Nancy Martin believes--no, she knows--it's true!
Here are the remarks Mrs. Martin delivered this past winter to a
seminar for parents sponsored by the National Federation of the
Blind of Washington:
Most blind people who are held up as role models are
exceptional and highly accomplished: lawyers, physicists, and
entertainment stars. I have been asked to give a talk because I
represent the average American blind person. I am not a rocket
scientist; I am a housewife.
I got off to a slow start as a kid. Born three months
prematurely, I did not walk until I was three; I was not potty
trained until the age of four; and I was in kindergarten for
three years. While my slow development was no doubt discouraging
for my parents, I eventually picked up speed and took off.
Today I am looking for work as a trained medical
transcriptionist. I am an amateur musician on several instruments
and play music, from classical music on the piano to old-time
folk music. I am an officer of the Clark County Chapter of the
National Federation of the Blind. I like to go canoeing and
backpacking with my husband, and I am currently helping a blind
person develop mobility skills.
The point of my story is that, even without support, my
parents were able to get me through a difficult childhood. So
don't be discouraged with your children. My parents were lucky to
get support from their family; for example, my grandfather took
me for nature walks to the local train yards and exposed me to
stimulating experiences. He even got me over my fear of his
electric lawn mower, its spitting grass and noise. A policeman
friend even locked me in a jail cell so that I could see what
that was like.
While I was a resident at the Washington State School for
the Blind, Mrs. Woodworth was one of my favorite housemothers.
She was a person who loved us and hugged us girls and filled in
for Mom. She introduced us to farm animals, took us to the zoo,
and exposed us to the hands-on experiences that are so important
to blind children.
Now in 1994, thanks to the NFB, blind children and their
parents have role models and much more support available. I want
to use my membership in the Federation to help other people and
parents of blind children to realize that you don't have to walk
on the moon to live a full and productive life. It is respectable
to be blind!
[Photo: Portrait. Caption: James Omvig]
CONSENSUS OR LEADERSHIP?
by James H. Omvig
From the Editor: Jim Omvig has spent the past thirty years
professionally involved in one way or another in work with the
blind. He has directed orientation and adjustment centers for the
blind in two states, and he worked for the Social Security
Administration in Baltimore for several years, creating a program
to find better jobs for blind and disabled people within the
Social Security system itself. Mr. Omvig is now retired in
Arizona because of illness. This has not stopped him from
becoming one of the leaders of the National Federation of the
Blind of Arizona and working hard to create a state
rehabilitation agency to serve the blind that would actually do
some good for Arizona's blind citizens. This article first
appeared in the May, 1994, edition of News and Views of Blind
Arizonans, the publication of the National Federation of the
Blind of Arizona. Here it is:
As individuals or as a part of the broader organized blind
movement, we of the National Federation of the Blind frequently
have serious and difficult choices to make. One of these arises
when we are pressured to seek or accept consensus on a particular
issue. The wiser course is often to exercise leadership and move
forward, working toward what is right and good for blind people,
whether or not a consensus has been reached with those who may
not even have a legitimate interest in the issue.
Lady Margaret Thatcher of the United Kingdom recently made a
statement which captures and defines the essence of the issue.
She said, "Always to strive for consensus is to abdicate
leadership!"
No doubt Lady Margaret would advocate consensus-seeking on
certain types of issues. However, she also makes it clear that
there are times when the duty to exercise strong and decisive
leadership overrides the attraction of seeking or accepting
consensus.
I believe that this consensus-versus-leadership question
must be decided on a case-by-case basis. It all depends upon the
issue involved. For example, with certain issues there is no
question of good or bad or of right or wrong for the blind:
"Should we or shouldn't we have a Christmas party?" "Should we
have a legislative luncheon, or would it be better to have an
evening banquet?" "Should we or shouldn't we lease a bus to
travel to the National Convention?" Or, finally, "Should all of
the organizations of and for the blind in Arizona meet in Phoenix
or in Tucson to discuss issues of mutual concern?"
On these and a hundred similar issues there is no question
of right or wrong, good or bad. Rather, people of good will
simply try to reach a consensus and to get along with one
another. People try to reach agreement about what is best for
most of them or about the best course of action based on the
prevailing circumstances.
On the other hand, there are times when there are real
questions of good and bad or right and wrong. There really are
major issues of what is best for blind people in education,
training, vocational rehabilitation, civil rights, etc. In these
situations it is essential for us as individuals and as an
organization to exercise strong leadership and to work vigorously
and with conviction for the objective which from our long
experience we know to be best for the blind of Arizona and the
nation; for, if we sacrifice our conviction of what is right in
favor of consensus, we inevitably water down or destroy the good
that we could have accomplished.
What is it in the nature or history of the National
Federation of the Blind which has placed us in this prominent and
weighty position? It has to do with the knowledge and power and
unswerving commitment to improve the lives of blind people, which
we have acquired through years of concerted action. We have met
to debate the important issues of the day. We have examined
various views of them. We have learned from blind people who have
experienced all kinds of educational and service programs--both
good and bad. And ultimately we have arrived at the pooled and
distilled thinking and wisdom of thousands of blind people from
across the country. We have identified the problems faced by the
blind, and we have developed sound solutions to those problems.
And, finally, we have tested our ideas to discover which ones
work in education, rehabilitation, employment, and civil rights.
In other words, through the vehicle of concerted action we
have developed a body of knowledge which is practical, workable,
and beneficial to the blind. Then, when experience has shown that
this knowledge is sound and effective and when we have determined
that it is in the best interests of the blind of America to work
toward specific objectives, we have concluded with conviction
that we will work together toward that common good. It is when we
are working with conviction to achieve a particular good for the
blind that we have no business giving up our conviction in favor
of consensus, simply because it appears to be the easy way out at
the time. I repeat, if you abandon your conviction of what is
right in favor of consensus, you water down the good you could
have accomplished.
Look at it like this: there are certain truths and methods
of achieving good for the blind which have become the core
beliefs and principles by which we of the Federation live and
function and about which we hold deep convictions. To suggest
that, in an effort to achieve consensus in a particular case, we
should agree to compromise these principles and ignore these
truths would be analogous to suggesting that someone seek
consensus by compromising commitment to the Ten Commandments!
Finally, one more factor must be added to the equation.
Since we have the experience and knowledge and since the purpose
of the National Federation of the Blind is to represent the blind
and to improve the economic and social well-being of blind people
everywhere, we have an affirmative responsibility to the blind to
do the very best we can on their behalf. Responsibility (the duty
to exercise leadership) arises from the knowledge and power which
we possess.
During the 1993 Arizona legislative session we of the
National Federation of the Blind of Arizona found ourselves faced
with a serious decision as we worked to create an Arizona
Commission for the Blind. We know to our cost that a separate
agency for the blind has the best possibility of offering quality
rehabilitation services. We know that with a small, well-informed
governing board dedicated to helping blind people lead productive
lives the agency has the best possible chance of providing
excellent programs. (The governing board is not the place to
provide representation for all competing interests.) We know that
existing services for the blind in Arizona are so bad as to be
nearly criminal. And we are certain what to do to bring about the
needed improvements.
Yet we were continually urged to abandon our responsibility
to exercise leadership and our conviction about what was right in
favor of consensus. There were those who thought that the easier
course (for them) would be for us to abandon our convictions just
to get along. But we did not stray from our course or lessen our
resolve.
Sometimes our own representatives in government are the ones
who are most guilty of pressing for consensus. Of course, it
would be easier for them, and they would not have to exercise any
leadership at all if the blind could all just get together and
get along--if the blind could just come to a state legislature or
to the Congress with a single point of view. But, of course, as
it is with virtually every other issue to come before a
legislature or the Congress, there are differences of opinion
between people. Members of the legislature or Congress must
determine which opinions are sound and right and then act
accordingly. This necessarily means that they, too, must
demonstrate courage and exercise leadership from time to time
rather than seek consensus, if they are truly to represent their
constituents well and do good.
As for the National Federation of the Blind, we understand
responsibility; we understand leadership; and we have a deep and
abiding commitment to the objective of improved lives for blind
people everywhere. Even though our motives are often impugned and
we are frequently maligned and verbally attacked and abused, we
intend to use our knowledge and power to lead. While we will seek
consensus when this is the reasonable course of action, we will
not abdicate leadership in favor of consensus and, in so doing,
diminish the good which we can achieve. We intend to change (in a
positive way) what it means to be blind.
[Photo: Two men fall through the sky, face down, with their backs arched and
their arms and legs extended. They wear jumpsuits, tight-fitting caps, and
goggles. One man is strapped to the back of the other man. Below are clouds, a
body of water, and terrain. Caption: Joe Naulty (bottom) in free fall with his
jump master.]
[Photo: Two men sit on the ground, one behind the other, with a multi-colored
parachute strewn out behind them. Caption: Joe Naulty and his jump master make
it safely to earth.]
JUMP
by Wayne Davis
From the Editor: Three years ago my older daughter began
talking about wanting to skydive. Despite the fact that I could
remember a time when I would have given a good deal to jump from
a plane, I was horrified! This was my child, and I was certain
that the parachute would not open properly. She chose the Sunday
morning of the Ohio state convention as the time for her first
jump. She probably thought I could not simultaneously chair a
convention session and worry about her. She was wrong.
She managed a total of three jumps before her cash ran out
that year and I could begin breathing again. But she convinced me
before it was over that the experience really was exhilarating
and that those who choose to engage in the sport have not
necessarily taken leave of their senses.
Wayne Davis is the President of the National Federation of
the Blind of Florida. He shares my personal views about jumping
out of airplanes with nothing more substantial than a few yards
of nylon to offset the power of gravity. But he, too, has learned
that not everyone sees things the way we do. And as with so many
other areas of life, blind people represent a cross section of
the general population with respect to skydiving. Here is Wayne's
account of a jump made by two Florida Federationists:
As President of the National Federation of the Blind of
Florida, I get all kinds of phone calls. Around the second week
in May of this year Joseph B. Naulty, who serves as President of
the Broward Chapter of the NFB of Florida as well as being
chairperson of our statewide Deaf-Blind Committee, called one
evening wanting me to join him in jumping out of an airplane. Joe
is fifty-nine years old, and I am fifty-two. Neither of us had
ever done anything of this nature before, so I declined the offer
to join him. I assured him that, if he decided to go forward with
his project, my prayers and best wishes would go with him, but
the rest of me would be busy on the ground--no matter what day
the jump was scheduled.
The day it actually happened was June 1. October Lowe, who
is also a member of the Broward Chapter, decided that she would
join her chapter president in jumping out of a plane. I didn't
know Tobie, as she is called by her friends, nearly as well as I
know Joe, but I knew that she is an acrobat and a dancer and much
younger than Joe, so I reasoned that, if they went through with
the jump, Tobie would probably be released from the hospital
months before Joe.
"I am doing this," Joseph Naulty told the man with the video
camera, "because I am a deaf-blind person. I am state chairman of
the Deaf-Blind Committee of the National Federation of the Blind
of Florida, and I want the public to see us as individuals. I am
just like any one else. I have a lovely wife, nice sons, a
beautiful home, and even a mortgage."
Then Joe and Tobie got into separate aircraft, each with a
jump master, who would jump in tandem with them, and away they
went. The beginner wears a parachute harness attached to the jump
master, who is the one actually wearing the parachute. Both Tobie
and Joe were instructed about what they needed to do during the
jump so that neither they nor their jump masters would get hurt.
"The doors had been removed from the airplane," Joe told me.
"You could hardly hear yourself think. The guy I was jumping with
told me to kneel down. He stood behind me and snapped his
parachute harness to mine. Then he told me to hang my feet out
the open door. We counted to three together, and then we just
rolled forward out of the plane."
They jumped from 12,500 feet, which is over two miles high,
and did what is called free fall for 10,000 feet before opening
the parachute. Free fall is just what it sounds like--you fall
with nothing slowing you down. "The guy told me," Joe said after
the jump, "that after leaving the plane I should count to fifty-
five, and at that point I would feel the parachute open. I
counted to fifty-five three times before I felt the shoot open."
I have watched the video of Joe's jump a half dozen times,
and each time it seems more frightening than the last. When they
left the plane, they fell end over end for several seconds. Joe
said he was surprised at how cold it was up there. Because of
Joe's hearing problem, he had worked out signals with his jump
partner so that the man could instruct him about what he needed
to do on the way down. The man tapped Joe on the arms, which was
the signal for Joe to spread his arms and arch his back. Once
this was done, they were in a position much like that of a bird
in flight. Keep in mind, though, that they were falling like a
rock all the time. Joe said that the feeling was really peaceful
once the fall had been stabilized. "When the parachute opened,"
Joe said, "I thanked God because I knew we were going to make
it."
The time from leaving the plane to hitting the ground was
just over six minutes. Both Tobie and Joe made it just fine. I
respect their courage and resolve, and I do believe that people
who learn about their jump will look at blind men and women in a
different way because of what they did. Am I sorry I didn't jump
with them? Well, as I had told Joe, I was going to be busy on
that day. Before they went up, I asked my wife Carmen if she
wanted to jump with them, but she assured me that she was going
to be busy too.
We can't all jump out of an airplane, but we can all put our
best foot forward and do the very best we can at what we do.
Whenever some task comes up that seems too hard for me to
undertake, I will remember Tobie and Joe, and doing so will help
me find the courage and strength to do the things I need to do.
[Photo: Portrait. Caption: Ed Bryant]
VICTORY IN THE INSULIN BOTTLE BATTLE AT HAND, MAYBE
by Ed Bryant
From the Editor: The Voice of the Diabetic is the quarterly
publication of the Diabetics Division of the National Federation
of the Blind. With the Summer, 1994, edition it crossed the
100,000 distribution mark--an accomplishment for which Ed Bryant,
Division President and Voice Editor, as well as the rest of the
Division deserve hearty congratulations. As the only publication
in the diabetes field directly addressing the challenges facing
blind diabetics, the Voice supplies necessary information and
provides a uniquely positive and constructive point of view in
diabetes management.
Ed Bryant recently sent President Maurer a copy of an
article which appeared in the Summer, 1994, issue of the Voice of
the Diabetic, together with two letters which he received after
he wrote the article. The subject is the Division's ongoing
struggle to persuade the two insulin manufacturers in this
country to package the product in vials of different shapes,
depending on the type of insulin and bearing appropriate tactile
symbols depending on its source. Since blind and visually
impaired diabetics are increasingly managing their diabetes
independently, the necessity of making such a change would seem
obvious. But the inertia of bureaucracy and the prevalence of
ignorance and misinformation about blindness have so far
prevented this sensible packaging change, regardless of the
Division's best efforts.
But, as you will soon see, there is now hope. Because
blindness is frequently one of the complications of diabetes, it
is important for all of us to be informed about the Division's
struggle and to take an active part where we can in encouraging a
positive outcome. Here is the cover letter Ed Bryant sent to the
National Center for the Blind, describing the Voice article and
subsequent correspondence:
Columbia, Missouri
July 14, 1994
To: Mr. Marc Maurer and Dr. Kenneth Jernigan
Dear Gentlemen:
Our Diabetics Division has, for some time, been lobbying
both the FDA and the insulin industry to include tactile
identification in insulin vial design. The inclusion of non-
visual cues on insulin vials would increase safety and
independence for blind diabetics who self-manage their diabetes.
The enclosed article will update you on this project. On
June 21, 1994, Mr. John Short called me to update me on the
official position of the FDA regarding insulin vial packaging. He
informed me that he had met with the insulin companies several
months before and also that he was in charge of any adjustment to
FDA regulations regarding insulin vials. He told me that he and
the industry representatives had decided to adopt regulations
requiring color differentiation between insulins, and symbols (a
cow, a pig, a human) on the label, to indicate insulin source.
I asked Short about vial shapes and tactile prompts to aid
insulin identification by the blind. He told me, "That had not
been discussed." I asked him if he had reviewed any of my
previous correspondence to Mr. Spungen or Dr. Kessler of the FDA
(detailed in the insulin vial article mentioned earlier). He said
he had seen none of it.
I reminded him of the current Centers for Disease Control
statistics that each year 15,000 to 39,000 people become blind
from diabetes, and I asked why label coloring was discussed, but
not change in insulin vial configuration. His response was an
eye-opener: "Someone who was totally blind would have someone
else taking care of medication for them." I asked him to consider
reopening the FDA's fact-finding process but was told that the
decision had been made. On July 13, I received the enclosed
letter from Solomon Sobel, M.D. It seems obvious that, after my
phone conversations, Mr. Short was overruled by higher authority.
It appears we have a partial victory, in that the NFB (according
to Dr. Sobel) will be involved in further meetings and
recommendations on this matter.
As I understand it, Senators Kennedy, Simon, Harkin, and
Dole are most involved in health care issues. Do you recommend
briefing these senators about this project at this time? Although
we will apparently be invited to further planning meetings, it is
apparent from John Short's statements to me that some FDA
individuals still hold limited and incorrect views about the
abilities and capacities of blind people to function
independently.
If Mr. Short is still in charge of this project as he
claims, he will probably go into meetings with his mind tightly
shut. I'm sure you know that a mind is like a house--closed up
tight when no one is at home.
Cordially,
Ed Bryant
President, NFB Diabetics Division
Insulin Vial Configurations; Movement Toward Solution
In the Voice, Volume 7, No. 3, I first wrote about the need
to package insulin in different shaped vials to aid non-sighted
differentiation between types. Since that time (April, 1992) I
have been in contact with both the Food and Drug Administration
(FDA) and the two manufacturers of insulin sold in the U.S., Eli
Lilly and Novo Nordisk.
Change comes slowly. My first efforts were directed toward
the manufacturers, whose replies were noncommittal. The FDA was
more forthcoming. A representative from Dr. David Kessler,
Commissioner of the FDA, wrote to me in June, 1992, outlining the
regulatory problems of such a change in insulin packaging and
what the industry, consumers, and the Diabetics Division of the
National Federation of the Blind could do about it. He asked for
specific suggestions on tactile marking of insulin vials. His
letter and my carefully researched reply, dated November, 1992,
were published in the Voice, Volume 8, No. 1.
Since those publications, I have received a great deal of
comment and correspondence on this matter. Consensus is
overwhelming--vial shapes need to be changed!
Since that time Voice of the Diabetic readers have continued
to make their views on this issue known to the insulin industry
and the FDA. Meanwhile, Voice readership has doubled, and thus
our power to get things done. It was time to address the insulin
vial issue again.
The letter published here was sent to the chief executives
of both Eli Lilly and Novo Nordisk. (For clarity both addresses
are supplied here.) A copy was sent to Dr. Kessler at the FDA. It
and their responses (or lack of same) represent the current state
of this matter. Novo Nordisk's failure to make any response at
all still astonishes me. I hope they do not treat all their
customers as badly. Here is the letter:
Columbia, Missouri
April 28, 1994
Randall L. Tobias
Chairman of the Board and Chief Executive Officer
Eli Lilly and Company
Indianapolis, Indiana
C. Henk Bleeker, President
Novo Nordisk Pharmaceuticals, Inc.
Princeton, New Jersey
Dear Mr. Tobias:
As President of the Diabetics Division of the National
Federation of the Blind (NFB), and editor of the Division's news
magazine, Voice of the Diabetic, I would like to discuss with you
an issue of great concern to blind diabetics and those losing
vision. Centers for Disease Control (CDC) statistics for 1994
estimate 650,000 new cases of diabetes per year, with 15,000 to
39,000 individuals becoming blind each year as a result of
diabetes. With an estimated fourteen million diabetics in America
it is no small issue.
As you know, Food and Drug Administration Regulations (21
CFR, Part 429) currently require all insulins to be packaged in
the same cylindrical vials. Anyone who mixes insulins (a common
practice) is forced to rely either on such impermanent cues as
rubber bands and strips of tape to differentiate vials or on
ability to read the label. There are too many blind diabetics
drawing their own insulins for this discriminatory situation to
go unrectified. Incorporation of specific, standardized,
nonvisual cues into insulin vial packaging would have little
financial impact but could greatly reduce the chance of insulin
dosage error.
Objections to such insulin vial modifications, upon close
examination, appear without merit. These objections break into
three groups: difficulty with FDA regulations, cost of
modifications, and organizational inertia. The first excuse,
"Blame the FDA, not us," was rebutted by Howard S. Spungen,
Consumer Safety Officer, Product Surveillance Branch, Food and
Drug Administration, who wrote to me on June 25, 1992, stating:
It may be possible to provide tactile recognition of insulin
by voluntary agreement with the manufacturers prior to
amending the regulations [emphasis mine]. If so, the tactile
features could be codified in the regulations at a later
date as requirements.
We are interested in your suggestions and would appreciate
further discussion on the best way to address your concerns.
Among other things we want to consider not only different
vial shapes [emphasis mine] to make the products
distinguishable by the blind or visually impaired, but also
alternatives that may accomplish the same purpose. Using
tactile features, such as raised bumps, on labels has been
suggested. If a tactile feature is used on labels, what
coding method should be used, Braille or another system? And
should the labels be used on all vials, or only by special
request?
The second excuse, prohibitively high cost, was rejected by
Mr. William Gierke, Manager of Pharmaceutical Package
Engineering, Eli Lilly and Company, who phoned me on May 6, 1992,
and stated:
As much insulin as we make, [cost of] the molding would
perhaps be up front quite a bit. But per product it would
probably round off. I don't really think the extra cost
would be a factor.
The third excuse, simply organizational inertia, can best be
answered by the following letter, which Mrs. Ruby Thielke, of
Hopkins, Minnesota, sent to Dr. David Kessler, the Commissioner
of the Food and Drug Administration, on September 14, 1992:
We are the parents of one of the diabetics who almost lost
his life because he accidentally got the bottles mixed up
and took an overdose of the fast-acting kind of insulin. he
is a businessman and of sound mind. It was very early in the
morning, [he was] getting ready for work and experiencing a
slight reaction, and he got the bottles mixed up. Had they
been shaped differently somehow, to distinguish the two
different types [that he takes], he might have avoided the
horrible convulsions. Had it not been for the quick action
of his wife calling 911, he might not be with us today.
We're asking you to consider a packaging change in insulin
bottles. By the way, our son is not blind.
A life is more valuable than the extra cost of a production
change. With the volume of insulin produced, this shouldn't
be a problem. [I] can't understand why this hasn't been done
a long time ago.
Mrs. Thielke brings up an important point. Diabetics,
sighted or blind, can become disoriented while having an insulin
reaction. (I know this from personal experience--it has happened
to me.) This mother knows that a tactile marking system might
have spared her sighted diabetic son the serious consequences he
faced. Tactile markings are not just for the blind.
Not so very long ago, insulin manufacturers did package
insulins of different duration in bottles of different shape. At
that time the Code of Federal Regulations (CFR) allowed such
differentiation, as stated in the following:
...cross section of the containers for isophane insulin
suspension containing less than 100 U.S.P. Units of insulin
per milliliter shall be a rounded square, and the shoulder
of the containers for insulin zinc suspension, prompt
insulin zinc suspension, or extended insulin zinc suspension
containing less than 100 U.S.P. Units of insulin per
milliliter shall be hexagonal.
According to William Gierke of Lilly (as cited above), the
FDA stepped in and enforced standardization in packaging because
of the confusion of too many colors. Tactile markings on insulin
vial caps were also tried in the past, but the insulin industry's
failure to standardize markings led to FDA disapproval. As Mrs.
Mildred Friedman, President of the Diabetic Renal Transplant
Self-Help Group, who has been in communication with your office
regarding this matter, states:
...there are only two manufacturers of insulin in the United
States. The possibility of cooperation [in developing an
industry-wide standard for nonvisual marking of insulin
containers] between two pharmaceutical houses does not seem
to me remote.
What Will Not Work
Braille won't work. Many diabetics, blind and sighted,
suffer the diminished tactile sensations of neuropathy. Because
of their diabetes, they simply cannot distinguish individual
Braille markings. Braille would help some, but those individuals
needing it the most would be able to use it the least. And
Braille literacy is by no means universal among the blind.
In a July 29, 1992, letter to me Ms. Janet Lee, Diabetic
Education Coordinator for the Independent Management for Blind
Diabetics program at Blindness: Learning In New Dimension, Inc.,
and First Vice President of the Diabetics Division of the NFB,
herself blind from diabetes, stated:
Braille is not a good option. There are simply too many
blind diabetics who are tactually very impaired by
neuropathy to make this a reasonable system.... Many of us
look back on the days when bottles were different shapes to
indicate types of insulin and wish it were so again. Those
kinds of firm, standard tactile cues are good ones even for
those individuals with very severe neuropathy. Skip the
color on the labels. Skip the Braille or non-Braille dot
system on vials or labels....
Colored labels won't work. Although color-coded labels might
reduce pharmacist error, of what use is color differentiation to
someone who cannot see the colors? A diabetic losing vision might
go through a period of color blindness. Many individuals are
colorblind from other causes. Vast numbers with impaired vision
are unable to distinguish reliably between colors. Worse, many
diabetics experience fluctuating vision, unpredictable periods of
degeneration and improvement in their sight. A mistake in the
reading of visual insulin cues could be fatal.
Modifications to insulin vial caps alone won't work.
Although, according to the FDA, the shape of the metal band that
holds the stopper in the insulin bottle is exempt from the CFR,
and changes to its shape would have immediate approval, the band
is too small to encode sufficient information on it to guarantee
reliable non-visual identification of contents. The area
available for encoding is a strip forty-five mm long and five mm
high. Any more than the most minimal tactile use of this space
would meet with the same objections as for Braille. Changes to
cap shape can convey useful information. When used in conjunction
with a system of bottle embossing, clear tactile cues on labels,
and/or modifications to insulin vial shape, such a system would
have merit. The caps are simply too small to carry all the needed
information alone.
Special labels supplied upon request will not work. Labels
should be used on all vials. I imagine specially marked labels
would be outrageous in price. In my contact with thousands of
insulin-dependent diabetics, both blind and those losing vision,
I find the vast majority are independent and do not want or need
to order special request labels on their insulin vials.
Furthermore, my whole proposal is for a universal system that
would eradicate dosing and dispensing errors along with the need
for special request labels.
What Will Work
In the past some insulin was packaged in containers having a
square cross section (shoulder), and some with a hexagonal
shoulder. Although the concentration so regulated is no longer
manufactured, this federal regulation still exists, which means
the FDA considers it safe for insulin to be packaged in
containers with a round, square, or hexagonal top cross section.
Bold, clear, permanent tactile cues of sufficient size will work.
Jordan Medical Enterprises of Garden Grove, California, has
had great success with their Count-A-Dose insulin measuring
gauge. The device employs a number of readily apparent, nonvisual
cues and landmarks and is designed to allow reliable insulin
mixing and measurement without sight. I recommend it for your
inspection. I have enclosed the insulin vial holder (t-bar) from
this product so you may inspect its markings. All the Count-A-
Dose user lacks is sufficient tactile means to distinguish
insulin types by touch.
One hundred years ago pharmaceutical bottles, like most
bottles of the time, incorporated bas-relief embossing to label
contents. Letters and shapes were far bigger than Braille, easy
to distinguish by touch, and of course permanent. Archaeologist
Peter Nebergall, Ph.D., reports that labeled bottles, fragmentary
and complete, are common on nineteenth century sites. Bas-relief
(raised letters) through glass embossing will work.
Embossing on the label, if of sufficient size, could carry
enough information. Fishburne Enterprises of Hemet, California,
markets the "Fishburne Alphabet," a set of symbols embossed into
sheets of vacuum-formed plastic, designed expressly for blind
persons with diminished tactile sensation (such as diabetic
neuropathy). A sample is enclosed. Insulin vial labels embossed
in the same manner will work.
A System
To help determine what kind of insulin marking system would
best meet the needs of blind and visually impaired diabetics, I
conducted an informal survey, which I sent to people all over the
country. Nineteen percent of the respondents were sighted,
eighty-one percent were blind, and eighty-seven percent of the
respondents were diabetic. Nineteen percent were rehabilitation
professionals, both blind and sighted, who work with blind
diabetics.
The survey elicited the following responses: ninety-four
percent of the respondents felt a change of some sort was needed.
Fifty-six percent preferred a change in vial shape; thirty-eight
percent preferred the addition of tactile markings. Of those
preferring tactile markings, most did not specify their
preference regarding marking location on vial or label. Twenty-
nine percent indicated they would like a combination of
distinguishing vial shapes and tactile markings. Regarding the
use of colored labels, ninety-four percent gave negative replies
or failed to reply at all. Only six percent of respondents
indicated preference for use of colored labels. I believe these
figures provide ample evidence that most diabetics responding to
the survey would prefer to be able to distinguish different kinds
of insulin by touch.
After reviewing many suggestions supplied by survey
participants, I've determined that a combination would satisfy
the needs of the majority. The combination would consist of
specially shaped vial shoulders to distinguish the duration of
insulin (short-acting, intermediate-acting, or long-acting) and
tactile cues on the bottle or label to identify the source of the
insulin.
Regarding the shape of tactile cues that might be used on
vials or labels, I suggest the following: round, square,
rectangle, triangle, and combinations. The following chart shows
sources and suggested respective tactile cues.
Source of Insulin Tactile Cue(s) human one round tactile cue human semi-synthetic two round tactile cues purified pork one square pork one long rectangle
(vertical or horizontal) beef/pork triangle & long rectangle beef one triangle
I propose that short-acting insulins be packaged, as they
are now, in cylindrically-shaped containers; that intermediate-
acting insulins be packaged in cylindrically-shaped containers
with cross sections (shoulders) of rounded square shape; and that
all long-acting insulins be packaged in cylindrically-shaped
containers with hexagonal shoulders. This reflects the FDA-
approved package modality widely used by insulin manufacturers
years ago. Such packaging would enable everyone to distinguish
between different insulins readily, based on the general
categories of duration. The new quick-acting insulins under
development at Eli Lilly could easily be incorporated into this
system.
If vial shoulders indicated duration and tactile markings on
containers or labels indicated source, six different tactile cues
would be necessary for the six sources of all insulin. All six
cues would be used under the short-acting category of duration.
Four cues would be used to indicate source under the
intermediate-acting category, and two cues would be necessary
under the long-acting category. A possible fourth category of
duration could be the fixed combinations used in an insulin pen.
That category would require three cues.
There are alternatives. Duration, the first priority in any
system, could be indicated by differing vial shape. The different
vial shapes could be combined with raised letters (R, N, L, etc.)
or other tactile cues to indicate source. Any kind of tactile
indicators must be simple and easy to identify in order to
minimize errors. Consumer confusion will not occur if markings
are simple.
To reiterate, thousands of diabetics are concerned with this
issue and are looking forward to determining reliably what
insulin they are using, once the above changes become a reality.
The new emphasis on tight control, as detailed by the recently
completed Diabetes Control and Complications Trial, will
translate into a rise in injection frequency with still more
opportunities for insulin misidentification and severe
consequences. We need these changes in the interest of patient
safety.
As I did several years ago when Diabetics Division member
Ken Carstens of Virginia, Minnesota, first brought this matter to
my attention, I intend to publish this letter and your response
in the Voice of the Diabetic, current circulation of more than
94,000. The Voice reaches more than 13,000 health professionals,
all diabetes treatment centers in the U.S., all rehabilitation
centers for the blind, hundreds of radio stations across the
U.S., and thousands of diabetics, both blind and sighted. Leaders
of the Diabetics Division place copies of the Voice in places of
public patronage all across the U.S., and we have subscribers in
many foreign countries. As Voice editor, I exchange copies with
all other publications dealing with diabetes issues in the U.S.,
and I will grant reprint permission to any of them.
More than two years ago, when I began investigating tactile
marking of insulin vials, insulin industry executives indicated
to me that changes such as those I have described were being
considered, but I have seen neither progress nor willingness to
move forward. How much longer must blind diabetics wait? Surely
insulin-dependent diabetics deserve to know what the industry
upon which they must depend is planning for their welfare.
Although the FDA has indicated interest and willingness, there
has been no apparent movement from the manufacturers. If such
measures as I have described are truly under consideration,
please let me know.
The Diabetics Division of the National Federation of the
Blind includes thousands of blind diabetics who live
independently and measure their own insulins. We have many blind
individuals, both instructors and lay people, ready and willing
to help you develop practical systems of non-sighted insulin
marking. Our lives depend on the good judgment we bring to
diabetes self-management. We are ready to offer this resource to
you.
To expedite changes such as I have described, formal
application to alter the regulations must come from the insulin
manufacturers, who will have to agree to standardize markings.
Once you request a specific amendment to the relevant section of
the CFR, Health and Human Services will commence regulatory
review, as will the Office of Management and Budget. The FDA has
indicated that exemption is possible, pending completion of this
regulation process. No good is served by further delay.
I and members of the Diabetics Division stand ready to
assist you. Please feel free to contact me if you have any
questions.
Thank you in advance for your response.
Sincerely,
Ed Bryant, President
Diabetics Division
National Federation of the Blind
Eli Lilly's response was prompt. Within several days, Mr.
Michael Querry, Diabetes Care Business Planning Associate, had
contacted me by phone, to set up a meeting. Shortly after his
call, I received the following communication:
Indianapolis, Indiana
May 27, 1994
Dear Mr. Bryant:
Your recent letter to Randy Tobias, Chairman of the Board
and CEO, was forwarded to me for response. I appreciate your
willingness to share your ideas with us.
During the past year Eli Lilly has discussed with the FDA a
proposal for worldwide standardization for color coding of
insulin formulations as well as identifying marks to better
recognize formulations. We have a meeting planned with the World
Health Organization, International Diabetes Foundation, European
Association for the Study of Diabetes, American Diabetes
Association, FDA, manufacturers of insulin formulations, and
syringe manufacturers to discuss these proposed guidelines for
implementation on a worldwide basis.
We will also discuss tactile recognition methods to ensure
better identification for visually-impaired individuals. If we
can get agreement, the insulin and syringe manufacturers are
prepared to move forward following this meeting.
While it seems as if it has taken a long time--and it has--
we are beginning to make some progress and show signs of
implementing some of your recommendations. Should you have
additional questions about our progress, please feel free to call
me at (317) 276-3204.
Sincerely,
Larry Ellingson, Executive Director
Global Diabetes Care Planning
Eli Lilly and Company
cc: Mr. R. Tobias
When I sent my letters to the CEOs of Lilly and Novo
Nordisk, copies of all correspondence were supplied to the FDA.
Because my previous contact, Howard Spungen, had not replied to
my most recent queries, the following was sent to Dr. David
Kessler, Commissioner of the FDA.
Columbia, Missouri
June 6, 1994
Dr. David A. Kessler, Commissioner
Food and Drug Administration
Rockville, Maryland
Dear Commissioner Kessler:
Over the past several years the Diabetics Division of the
National Federation of the Blind has been working to rationalize
insulin packaging, to serve the needs of insulin-using diabetics
better. Since early 1992 members of my organization and I have
been in contact with your office and with the CEOs of Eli Lilly
and Novo Nordisk, the manufacturers of all insulin sold on the
U.S. market.
On April 28 of this year I contacted both Eli Lilly and Novo
Nordisk, and on May 2 I sent copies, with a cover letter, to Mr.
Howard S. Spungen, Consumer Safety Officer, FDA. Your office also
received copies of all correspondence.
As of this date Novo Nordisk has failed to respond. Your
organization has also been silent. Eli Lily's reply (enclosed)
speaks of a proposal for worldwide standardization for color
coding of insulin formulations and a meeting of industrial and
health care professional organizations (WHO, FDA, ADA,
International Diabetes Foundation, European Association for the
Study of Diabetes, Lilly, Novo Nordisk...) to discuss such a
proposal. Significantly, no consumer organization appears on the
list. Why is that?
We, the Diabetics Division of the National Federation of the
Blind, are the largest group dealing with blindness and diabetes.
Not doctors, industrialists, or bureaucrats speaking for
diabetics, we are diabetics speaking for ourselves. We are those
who must use insulin. We have a great deal to offer the decision-
making process. Our news magazine, Voice of the Diabetic, now
reaches more than 99,000 people, in all U.S. states and
territories, and twenty foreign countries. Can you provide one
good reason why we have not been invited to the above meeting?
In my experience, products and policies established for
blind diabetics, without input from blind diabetics, are at best
expensive exercises in irrelevance and all too often make matters
worse. This plan to color-code insulin labels to help the blind
is surely one such example! Please ask us. We use insulin.
Since I haven't heard from Mr. Spungen, I'd appreciate
hearing from you. As detailed in my previous correspondence, the
problem of insulin vial misidentification by blind and visually
impaired diabetics deserves serious attention and positive
action. Members of our organization have years of experience
dealing with this issue. We are at your disposal.
Sincerely,
Ed Bryant, President
Diabetics Division, NFB
On June 12, 1994, at the Annual Meeting of the American
Diabetes Association in New Orleans, I met with Mr. Michael
Querry, who had contacted me from the business office of Eli
Lilly and Company. Mr. Querry informed me that Lilly is exploring
many options, one of them being insulin vial caps of different
shapes and colors. He agreed with me that blind, insulin-using
diabetics should evaluate any tactile-marking system before it is
placed in production, and he promised that Eli Lilly would work
with the Diabetics Division of the National Federation of the
Blind.
When he told me that Lilly is looking to achieve a world
standardization of insulin packaging, I reminded him of the
recent (and in parts of the world unfinished) struggle to get
U100-strength insulin accepted as a standard. Instead of putting
that process on the international bargaining table, the insulin
industry made the U.S. market an example--and the rest of the
world is gradually falling into line. I suggested that Lilly do
it again--develop state-of-the-art tactile packaging for the
American market, and let the enormous influence of U.S. medicine
carry the message to the rest of the world.
On June 21 and 22 I spoke with Mr. John Short, Consumer
Safety Officer, Division of Metabolic and Endocrine Drug
Products, Food and Drug Administration, Rockville, Maryland. He
informed me that, "The decision has been made," that because
"someone who was totally blind would have someone else taking
care of medication for them," to take the needs of the blind into
account would be pointless, a scheme of color-code insulins was
about to be submitted for public comment!
According to Mr. Short, he had met with representatives from
the insulin industry several months before to work out this
latest initiative. No consumer groups were involved in the fact-
finding process, and from his statements about blind folks not a
great many facts were found either. Kenneth Jernigan, President
Emeritus of the National Federation of the Blind, writes in If
Blindness Comes, "Loss of sight need not be a tragedy, but it can
be--and probably will unless correct information is available."
This time the FDA clearly didn't do their homework. They
need to reopen the fact-finding process, and their policy makers
need to shed their antiquated, insupportable, false, and
discriminatory notions about the abilities of blind people. The
time when disabled people were chained to the bed is long since
over. Blindness is not synonymous with inability!
Novo Nordisk's total silence is hard to figure. A drug
company depends on money from its customers. Are they that
unconcerned? What don't they get?
They are hardly unaware of the issue. Their U.S. office
received the letter published above May 2, three days before Eli
Lilly received theirs. On June 11, 1994, Patrick M. Quinn, M.D.,
Novo Nordisk's Director of Medical Marketing, happened on the
Diabetics Division's booth at the ADA convention in New Orleans.
There he told me he had just attended a meeting between his
company, Eli Lilly, the FDA, and others, where insulin packaging
reform was discussed. Yet Novo Nordisk seems unwilling to address
blind diabetics directly. They're ready to think for us but not
to ask us. This must change.
If you are an insulin-dependent diabetic and have any input
on this matter, please make your thoughts known to FDA
Commissioner Kessler (at the address shown in this article), and
please send me a copy at the Voice of the Diabetic, 811 Cherry
Street, Suite 309, Columbis, MO 652013.
This project will continue until the insulin industry and
the FDA make the necessary changes. Voice of the Diabetic will
keep you abreast of the latest developments.
Columbia, Missouri
June 22, 1994
John Short, Consumer Safety Officer
Division of Metabolic and Endocrine Drug Products
Food and Drug Administration
Rockville, Maryland
Dear Mr. Short:
Attached is a copy of my letter to the insulin
manufacturers. This is the item I promised to fax to you.
I appreciate your calls to my office on June 21 and 22,
regarding proposed regulations for insulin vial coloring. The
attached letter details my objections to such an approach. It is
apparent that the blind were totally excluded from the planning
process because of the antiquated and insupportable notion that
blind diabetics are incapable of self-management. Your perception
that "someone who was totally blind would have someone else
taking care of medication for them," is totally vitiated by
thousands of blind diabetics, myself included, who have been
successfully self-managing our diabetes for decades. All we ask
is the means by which we can distinguish between insulins without
sight. This would aid our safety and reduce dosage errors. We
have everything else under control.
The time when disabled people were chained to the bed is
long since over. Blindness is not synonymous with inability! Such
discrimination against the disabled led to passage of the
Americans With Disabilities Act in 1990.
Because the FDA clearly did not do its homework in this
matter, I asked you to consider reopening the fact-finding
process but was told, "The decision had been made." Such
truculence would not be unexpected from the insulin industry,
which of course has a vested interest in doing the least, but why
is it true that the most untenable positions are the most
vigorously defended?
Many manufacturers and vendors offer adaptive products for
accurate non-sighted drawing and mixing of insulins. As
discussed, I am mailing to you a copy of the "Resource List of
Aids and Appliances," and a Voice of the Diabetic, both published
by the Diabetics Division of the National Federation of the
Blind.
Your response would be appreciated.
Most Sincerely,
Ed Bryant, President
Diabetics Division, NFB
Rockville, Maryland
July 11, 1994
Mr. Ed Bryant, President
Diabetics Division, NFB
Columbia, Missouri
Dear Mr. Bryant:
This is in response to your letter of June 6, 1994,
addressed to Dr. David Kessler, regarding your concern that the
interests of the blind have not been considered in insulin
labeling and bottle design in order to facilitate identification
by blind people. Because this Division handles issues relating to
insulins, your letter has been forwarded to us for reply.
During telephone conversations on June 21 and 22, 1994,
between yourself and Mr. John Short of this Division, Mr. Short
explained to you the efforts of the FDA to make insulin packaging
more uniform and distinctive. Mr. Short described our plan to
publish in the Federal Register a Notice of Proposed Rulemaking
which would suggest: 1) colors for specific dosage forms of all
insulins (animal and human) and 2) the use of distinctive symbols
to identify the source of the insulin, i.e., small silhouettes of
a pig, cow, pig/cow, or human for pork, beef, pork/beef, and
rDNA/semi-synthetic sources, respectively. He also said that
publication of such a document would allow all interested parties
to be part of the rulemaking procedure by expressing their
special interests, and then FDA would evaluate all the comments
and respond to them in aggregate and come to a final conclusion
as to container label and carton format.
During your conversation with Mr. Short you indicated that
you were pleased with our initiative but none of the changes to
be proposed in the rulemaking procedure would help blind persons
readily distinguish between their fast-, intermediate- and slow-
acting insulins. You suggested he look into some of your
recommendations for accommodating the blind diabetic in your
previous communications to Dr. David Kessler and Mr. Howard
Spungen at FDA. Mr. Short promised that we would look into them
to see if any might be included in the proposed rulemaking.
Subsequent to your conversations with Mr. Short and in response
to your letter dated June 22, 1994, we have decided to hold
meetings with interested organizations, including the National
Federation of the Blind, and the insulin manufacturers to
determine what can be done to assist blind diabetics. We hope the
resulting recommendations in this regard can be included in the
proposed rulemaking.
As for the international meeting you refer to in your
letter, FDA was not involved in the development of the meeting.
It was organized by the International Diabetes Federation as a
satellite meeting on July 11, 1994, during the American Diabetes
Association annual meeting in New Orleans. FDA learned indirectly
that color coding of insulins would be discussed at the satellite
meeting and offered to present (and was accepted) the proposed
scheme conveyed to you by Mr. Short. Please contact the
International Diabetes Association for further information
concerning that meeting.
Thank you for your interest in this very important subject.
Sincerely yours,
Solomon Sobel, M.D.
Director, Division of Metabolism and
Endocrine Drug Products
Center for Drug Evaluation and Research
******************************
If you or a friend would like to remember the National Federation of the
Blind in your will, you can do so by employing the following language:
"I give, devise, and bequeath unto National Federation of the Blind,
1800 Johnson Street, Baltimore, Maryland 21230, a District of Columbia
nonprofit corporation, the sum of $_____ (or "_____ percent of my net estate"
or "The following stocks and bonds: _____") to be used for its worthy purposes
on behalf of blind persons."
******************************
[Photo: Portrait. Caption: Jan Bailey]
TECHNOLOGY, A BLESSING OR A CURSE?
by Jan Bailey
From the Editor: Jan Bailey is one of the leaders of the
National Federation of the Blind of Minnesota. She has recently
entered the world of technology and has lived to tell the tale.
Here is her story as she tells it, together with some hard-won
advice for those contemplating this step:
In November, 1992, I was plunged into the world of
technology. I work as a rehabilitation counselor for State
Services for the Blind in Minnesota. Our agency had received some
extra money at the end of the fiscal year, and the powers that be
decided to computerize the agency. They also decided to buy
technology for blind employees. I was never consulted about what
technology I would need, but nearly everything imaginable was
ordered for me.
About two years before I started learning how to use all of
this equipment, I had been urged by several people to ask the
agency to buy some adaptive equipment to help me be more
independent on my job. The problem was that I didn't really know
what I would use it for. Several of my computer programmer
friends had told me you should never buy a computer until you
know what you want it to do for you; and, since I didn't know, I
had never done anything about it.
On November 10, 1992, my first piece of technology arrived.
It was the Braille 'n Speak. The reason I so clearly remember the
date is that we had the next day, Veterans Day, off. I took the
Braille 'n Speak home with me along with the tutorial tapes and
taught myself how to use it. In two days I could create
documents, edit them by inserting and deleting, and use the
calculator and clock. I began entering my client files, phone
numbers, addresses, case dictation, calendar, disability codes,
facility fee charges, list of clients by counties I serve, etc.,
into the Braille 'n Speak. I soon found it invaluable, because
I'm out of the office a lot, and it was difficult for me to find
a good system for keeping a calendar. I used to write things down
on sheets of paper, and then I would have to search through my
notes to find bits of information I needed.
If everything else I received had been as easy to learn as
the Braille 'n Speak, I would have been in great shape. The
Braille Blazer was easy to learn to operate, but when I entered
the world of computers, it was a different story. I started with
the laptop. I knew nothing about a computer. I have a Toshiba
laptop with an Accent speech board and JAWS as the screen review
program. The jack for the speaker kept breaking until someone in
our agency's engineering department adapted it. But this occurred
only after months of frustration. When I started using the
computer, I knew nothing about DOS (the Disk Operating System),
so things were very difficult. I took a couple of courses from
our local community education program, and the agency paid for a
reader for me. I felt it would be easier to learn that way,
because I was still having trouble using JAWS, and I knew the
instructor at the school wouldn't know how to help me. I decided
it would be easier to learn about DOS and WordPerfect and then
adapt what I had learned for use with JAWS.
Next my desk-top computer was set up. I have JAWS in that
computer as well and use my Braille 'n Speak as a synthesizer. I
also have an eighty-cell Navigator, and I use Braille most of the
time on my desk-top, because I fill out a lot of forms such as
plans, financial inventories, and worksheets to generate
authorizations that my secretary then prepares. I find it much
easier to fill in a form by using Braille. I also have an
Arkenstone reader for use with my computer. First I couldn't get
JAWS to talk on the desk-top. Then the card in the scanner was
faulty, and it would short out the computer. Then, when I sent
files from my Braille 'n Speak to the desk-top computer, my
computer would lock up and sometimes short out. It was very
frustrating, and there were days I wanted to throw all my
technology right out the window, but I persisted. I also have a
print printer in my office and the Braille translator program
Megadots for translating my documents into Braille to be printed
on my Braille Blazer.
If it had not been for my many computer-literate friends who
helped me, I never would have learned how to use all these
devices. I still don't know everything there is to know about
them, but I can do the things I need to do. I'm much more
independent on my job. I can read much of my own mail on the
scanner and can fill out my own plans and other forms, so I use
much less reader service. But I want to say as clearly and
forcefully as I know how to that without good Braille skills none
of this technology would have done me any good. I needed Braille
to take notes and read the Braille manuals I was given, and I
certainly need Braille when my technology breaks down--and it
always does break down, usually when you need it the most. You
have to let yourself rely on the technology, but you still have
to have backup systems for when it breaks down. When you use
technology, you have to be willing to make many phone calls, find
solutions to the many problems you encounter, and spend many
hours outside of work studying. There are getting to be so many
different kinds of programs and pieces of equipment that the
technology specialists don't know how to use every program. They
can't keep up.
Technology can be both a blessing and a curse. If one has
good basic blindness skills and then adds technology as the
frosting on the cake, it can be a good thing, but if one uses
technology as a substitute for good blindness skills, it will
definitely be a curse. Even though I always carry my Braille 'n
Speak in my purse, I also carry a couple of slates and styluses.
If I need to write something down that I want to study and refer
to, I use my slate and stylus, but for some note taking--
especially things I want to save--the Braille 'n Speak is great.
The most important piece of advice I would give to someone
just beginning to learn to use technological aids after obtaining
good blindness skills would be to find several people who can
help you when you have problems. Take notes so you don't have to
keep calling them back to ask the same question. Find several
people so you don't have to call the same person all the time.
Then, when you've become reasonably competent using your
equipment, try to help others who are just starting out. I
wouldn't go back to the days without technology because I'm
definitely more independent on my job, but it's not a panacea. I
would never trade it in for my good blindness skills.
[Photo: Portrait. Caption: Loraine Stayer]
THE STATE AGENCY FOR THE BLIND: NOT THE ONLY ANSWER
by Loraine Stayer
From the Editor: The following article is a sad reminder of
how far we still have to go in securing the right of blind people
to obtain the rehabilitation and education they need to take
their rightful places as fully productive citizens of the United
States of America. The federal government allocates billions
every year for rehabilitation, and state governments add billions
more to the effort. State rehabilitation agencies are designated
to spend the money and arrange for, supervise, or actually carry
out the work involved. Hundreds of millions of this funding is
earmarked for rehabilitating blind people. Yet all too often the
would-be recipients of all this largess, training, and skill
development find only frustration, discouragement, and
disappointment. We can hope that with the clients' right of
choice language written into the 1992 amendments to the
Rehabilitation Act we will see some improvement in this sorry
scene, but don't hold your breath. Inertia is a hard force to
counteract, and all too frequently the impulse to do things the
way we have always done them will slow the rate of change to a
snail's crawl.
The job of the organized blind movement in all this is
clear. We must be informed about what the law provides, ready to
insist that clients receive the services to which they are
entitled, energetic in keeping the state agency on its toes, and
creative in finding alternative ways of getting the job done when
the agency refuses. The details may change from state to state,
but the problems we must solve are depressingly familiar.
Loraine Stayer is the volunteer coordinator for the Job
Opportunities for the Blind (JOB) Program in New York. JOB is a
job referral and education program jointly sponsored by the
National Federation of the Blind and the U.S. Department of
Labor. The following is what Loraine has to say about helping
blind people despite the discouragement provided by New York's
state agency serving the blind, the Commission for the Blind:
As the local Field Representative for the Job Opportunities
for the Blind Program, I often encounter clients of the New York
State Commission for the Blind and Visually Handicapped.
Sometimes I work as a liaison between client and counselor.
Sometimes I function strictly as an advisor to the client. Often,
when asked, I suggest that the client would get further with the
job search without the Commission. This is not always the case,
of course. The question is why it should ever be the case.
One client's experience will illustrate the problem even if
it does not provide a satisfactory explanation. This gentleman,
whom I will call Sam, joined our chapter two years after I had
met him at a job fair (not a JOB-sponsored event). I recall
thinking when I met him that he didn't carry a cane and ought to.
At the time he asked my advice, Sam was attending college.
He wanted the Commission to fund his college education, since he
had been paying for it himself. He had already earned an
associate degree. Previously, when he attempted to open his case,
the Commission determined he had a learning disability and sent
him to the Association for Children with Learning Disabilities.
Unfortunately, this was a misjudgment on the part of the
Commission. Sam was aware he was smarter than the low-functioning
children (none of whom was a child) at the Association. He acted
out, as they say, when he was told by a counselor that she wished
he'd been on a plane that had recently crashed in Scotland.
Sam was sent home in disgrace and continued his education on
his own. This time he tried again while actively enrolled in
college classes. Instead of taking into account what he was
doing, the Commission decided to send him to the Jewish Guild for
the Blind (JGB) for evaluation. I advised him against it. He
didn't listen, dropped out of classes, and went for evaluation.
Jewish Guild for the Blind staffers immediately set him to work
putting nuts on bolts. He objected strenuously, saying he had no
vocational goals congruent with putting nuts on bolts. No one
listened. He dropped out of the evaluation and requested that his
case be closed again. With his permission and in his presence I
had occasion to review his Commission records. The Commission
staff had studied every one of his negatives, which included a
weakness in math and that problematic learning disability. Sam
could not spell. The Commission had concluded that he was not
college material.
At that point we had a serious discussion. Sam told me he
wished to be a travel agent, and indeed he had a high verbal
ability. I pointed out that he didn't need the Commission for
that. Subsequently he went to work in the field of telephone
solicitation. Because of the Commission's interference, he
dropped out of college.
In Sam's case the client could go farther without the
Commission than he could with it. Why? Because he had positive
qualities the Commission simply could not or would not see. He
lacked the foundation to do college level math, but there was no
reason he could not have taken a remedial course. When a man
wants to be a travel agent, he ought to look for work in that
field. He ought not to be told he should work in a factory. In my
opinion the Commission was out of line.
Why? The underlying problem can be found in the make-up of
the Commission itself. I can speak most knowledgeably about the
Long Island office, since I know a good smattering of the
counselors. I won't say they are all poor, since that could not
possibly be true. (Could it?) But some of the shortcomings seem
common to many. Clients complain that the counselors lie to them.
Not only do they lie, according to the clients, but they do so
constantly, shaping the facts to fit their own ends. Faced with
the truth in writing, counselors often back down. But they simply
aren't respectful of the clients. On the contrary.
Counselors are in a unique position of power over their
clients. If the clients seek outside help (such as turning to the
NFB), threats are not uncommon. One client was told by two
workers, "If you remain a member of the NFB, you will receive no
services from us." When a letter of protest was sent to them,
with copies to the Director of the Commission, they backed down
immediately and denied everything in a formal letter that
promised continued service to the client. I later learned
unofficially that the director had instructed the counselors to
write their letter.
Racism is rampant. One black client was told he could not be
given a computer with which to do his work because, "How do we
know you won't steal it?" Who said this? The senior of the two
counselors who tried to deny service to NFB members.
One vindictive counselor can do a lot of damage to the self-
esteem of a blind person. Self-esteem is fragile even among the
sighted community. But even more serious, a counselor with low
self-esteem can do much damage to the self-esteem of his clients.
One of the blind counselors in the local office does not have
much in the way of this commodity. His mobility is poor. He does
not believe enough in himself to extend it to his clients.
A client of the Commission wishes to learn Braille. He is
told he has too much vision--he can read one letter at a time.
How can he learn Braille without help from the Commission? Well
one way is to have another blind person teach him. Another is to
obtain Beginning Braille for Adults, on tape and in Braille, from
the Materials Center of the NFB and to teach himself.
Mobility lessons are hard to come by on Long Island. Clients
are put on a waiting list. At the same time vendors are told that
there are no clients available. When a client requests a specific
vendor, she is told a referral will be made, but it never is. The
client turns for help to her mother and works up an informal
mobility lesson, just enough to get around. A better approach
would be to come to an NFB chapter meeting and ask a
Federationist with good mobility to share his knowledge. Mobility
lessons are often shared by our chapter members. As long as the
counselors in the Commission for the Blind have no idea that
blind people can indeed make successes of their lives, they
cannot be assets to the blind.
So what's the alternative? Blind people will continue to be
born in New York or to move here, and life must be lived. When
the Commission for the Blind fails to help, blind people turn to
other blind people for assistance, or they are referred to the
National Federation of the Blind.
Why is it that the phrase "the blind leading the blind" is
considered pejorative? During the twenty-one years of my
membership in the Federation I've seen many lives changed for the
better when blind persons lead the way for their blind brothers
and sisters. One blind man searches for three years to get a job
in a supermarket. Very shortly supermarkets are hiring blind or
otherwise-handicapped people for similar jobs. The first man
might not consider himself a pioneer, but he is.
Self-esteem for a blind person most often begins to grow
when he or she surrounds him or herself with competent blind
persons. The National Federation of the Blind provides a positive
philosophy of blindness, and its members believe and live this
philosophy.
When the sighted will not lead the blind in positive
directions, only the blind are left to do it. But because of the
National Federation of the Blind, leadership by the blind is
becoming more and more the first resort, not the last.
[Photo: A large gabled house on a tree-lined street corner. Caption: The
Pillsbury Mansion in Minneapolis is the new home for BLIND, Inc., the adult
rehabilitation facility conducted by the National Federation of the Blind of
Minnesota.]
BLIND, INC., MOVES TO NEW LOCATION
by Peggy Chong
From the Editor: With the growth of the disability-rights
movement in general and, more particularly, the increasing
effectiveness of the public education campaign of the National
Federation of the Blind, it is easy to forget that there are
still people who demonstrate deep resentment and profound fear
when faced with the necessity of close contact with disabled
people. Such unpleasant interludes, however, continue to be
inevitable, but they should not discourage us, for they are much
less frequent than they used to be. Moreover, today we sometimes
even find that other people are prepared to stand with us against
this kind of injustice and discrimination.
The recent experience of BLIND, Inc., our adult
rehabilitation program in Minneapolis, provides a case in point.
As the program has grown and expanded, BLIND, Inc., found that it
badly needed additional space and a more flexible facility. Some
months ago NFB First Vice President and BLIND, Inc., Executive
Director Joyce Scanlan and the Center's board began searching
seriously for another building. Eventually they discovered that
the mansion originally owned by the famous Pillsbury family was
on the market. It would need a good bit of work, but the building
was sound, and the architecture was remarkable. Everyone agreed
that it would make an ideal teaching facility. The property was
purchased and the renovations begun. By the end of last March,
enough work had been done to allow the staff and students to
move in. But the problems were not at an end. Their next-door
neighbor decided that the presence of a group of blind people in
the neighborhood would lower property value and cause all kinds
of difficulties. He sued the city in an effort to stop the sale
and then suggested that, if BLIND, Inc., would pay him $100,000
to compensate him for his losses, he would drop his suit.
BLIND, Inc., was having none of it. We all know how much the
property values in the area around the National Center for the
Blind have increased since we moved in and began reclaiming the
property. BLIND, Inc., expected to improve its neighborhood in
the same way. No one could be allowed to argue that property
values would fall because of the presence of blind people. So the
suit continues, and BLIND, Inc., continues to make friends and
improve its neighborhood. Peggy Chong, President of both the
Metro Chapter of the NFB of Minnesota and the BLIND, Inc., Board
of Directors, recently sent us the following statement and
newspaper editorial. Together they tell the story. Here they are:
Blindness: Learning in New Dimensions (BLIND, Inc.) has a
new home. It is the Charles S. Pillsbury Mansion at 100 East 22nd
Street in Minneapolis. On December 29, BLIND, Inc., and the NFB
of Minnesota purchased the building and opened a new chapter in
the lives of blind Minnesotans.
Much restoration and remodeling are going on to accentuate
the magnificence of the mansion and to show the neighborhood how
respectable it is to be blind.
On Friday, October 14, we will hold our grand opening. Many
of our new neighbors have already come to learn about our
organization and our philosophy of blindness. One neighborhood
group is beginning to hold meetings here, giving us more
opportunity to show just what good training and a positive
attitude can do in the lives of blind people. Through such
contacts we also get to meet more of our neighbors.
We have one neighbor, however, who does not like the idea of
blind people in his neighborhood. But times are truly changing as
evidenced by the following editorial from the July, 1994, edition
of the Surveyor, the local newspaper in our area. It is clear
that the rest of our new neighbors see him for what he is and
ignore his warnings about the threat of blind people. Here is the
editorial:
Case of BLIND, Inc., Illustrates Growing
Intolerance in Inner City
The Pillsbury Mansion at 100 East 22nd Street was purchased
a few months ago by BLIND, Inc., to be used as a school for the
blind. The owner of number 116 next door, Ken Betzler, is suing
the city, a suit which BLIND, Inc., is forced to defend, over a
zoning permit granted to the school involving off-street parking
between the two properties. The permit was required for the
school to operate, and without it the purchase would have been
halted.
In addition to the arcane details of the parking dispute--
BLIND, Inc.'s position is firmly supported by Planning Department
staff--Betzler opposed the original purchase by arguing that the
Pillsbury Mansion was a candidate for home ownership. He based
his opposition on the avowed goal of the Whittier Alliance to
promote home ownership in the neighborhood, and not on any
realistic market prospects.
While Betzler does indeed own the home in which he lives, it
is less widely known that he also rents rooms in his mansion,
making him a landlord and giving his claims to promoting home
ownership a disingenuous tone.
If you had called Betzler's home phone number at 6:00 p.m.
on June 24, you would have heard the following message: "If
you're calling about the room, please leave your name, telephone
number, and the time you called; and I'll get back to you as soon
as I can." Twenty-four hours later the message said the room in
question had been rented.
Betzler has also argued that the presence of a school for
the blind, to which his lawyer referred in a letter to the
Planning Commission as a "social service agency," will lower his
property values. In a proposed settlement letter to BLIND, Inc.,
dated May 17, Betzler's attorney, Bruce Rasmussen, asked for
$100,000 in compensation for this perceived decline in value.
BLIND, Inc., has rejected the proposal out of hand.
The original zoning decision was approved by the city
council on a twelve-to-one vote; yet both Betzler and Rasmussen
believe they have a strong case.
Rasmussen's role is interesting, because he too owns a
mansion only a block away, which he renovated for his business in
1979. Rasmussen is chief counsel for the Whittier Alliance, which
voted its approval of the BLIND, Inc., project. What would
Rasmussen do were the Alliance to decide to submit arguments to
the court on behalf of BLIND, Inc.? Is it possible that
Rasmussen's role as counsel to the plaintiff has had the effect
of influencing the Alliance board not to take further steps on
behalf of BLIND, Inc.? So far, no one seems to be bothered by his
prima facie conflict of interest.
Apparently, the message here is that lawyers make better
neighbors than schools for the blind. That must be stressed: this
is not a home for the blind or a "social service agency," as if
either might somehow diminish the acceptability of the proposed
use for the building. It is a school. If Betzler's property loses
value because of diminished access to off-street parking for his
tenants, it will be value it didn't have in the first place. If
he is claiming that the mere presence of blind people during the
day is the cause of a decline in property value, then his
attitude is discriminatory and smacks of the redlining of an
earlier, some thought forgotten, era.
The case presents an object lesson in an ongoing trend in
the inner city toward intolerance. The unreasonable attacks on a
proposed youth housing project in Loring Park and, earlier,
successful resistance to the purchase of property in Stevens
Square by a substance abuse organization are but two examples.
The resistance to the renovation of 1801 LaSalle for low-
income renters in Stevens Square bears remembering. Even the most
fanatically opposed local landlords now admit that the building
is well run and an asset to the neighborhood. Yet some interests
continue a veiled attack on the property by proposing development
schemes of the adjoining commercial property that conveniently
envision the demolition of 1801 LaSalle.
The real enemy, to paraphrase Franklin Roosevelt, is fear--
fear of the unknown, fear of people different from us, fear of
people we suspect hold different values.
All people, regardless of physical abilities, economic
status, or skin color, want the same things: to feel secure, to
have an equal opportunity to succeed, to be productive, to pursue
happiness. To obstruct that pursuit in ways either overt or
insidious violates the Constitution and affronts the dignity of
those in whose way we stand.
WORK ETHIC OF BLIND 20/20
Sightless Employees Proving Valuable Resource
by Lesli Hicks
From the Editor: The following article first appeared in the
June 9, 1994, edition of the San Antonio Express-News. It
demonstrates that little by little the word about the
effectiveness of blind workers is spreading. Here it is:
Cellular One, Phone Power, U.S. Long Distance Corporation,
and USAA are among a handful of Alamo City companies employing
blind women and men.
But those employers aren't likely to remain an anomaly for
long, observers said. That's because jobs once thought to require
extraordinary effort by visually disabled people no longer bear
that stigma.
"I would say that the trend (of employing the blind) is
going in the positive direction," said James Gashel, Director of
Governmental Affairs for the National Federation of the Blind in
Baltimore, a nonprofit organization seeking to integrate the
blind in corporate America.
In recent years technology such as computerized Braille,
enhanced print, and synthetic speech has helped the blind land
jobs. Well-paying ones, too.
The Texas Commission for the Blind reported that in 1993
blind people in the state were earning as much as $880 a week as
nursing supervisors, $750 a week as instructor supervisors and
$650 a week as teachers, among other posts.
To be sure, the blind could have performed most of those
tasks long before. Technology simply has nudged employers
increasingly interested in diversity to recognize the talent pool
of blind professionals, those in the know said.
"There are a lot of things you can do without sight," said
Ferdincio Cruz, nineteen, an operator at U.S. Long Distance who
travels to and from his thirty-hour a week job by special city
transit.
Parris "Butch" Holmes, chairman and chief executive officer
of U.S. Long Distance, said the company first began hiring blind
operators about a year ago as part of being a good corporate
citizen.
"But...the payback has been unbelievable," Holmes said,
citing an employee-rating system that ranks his four blind
operators--a fifth is on the way--as "outstanding."
One reason U.S. Long Distance's blind operators have
performed so well, Holmes believes, is their work ethic.
"They do not think that a job is handed to them. They feel
like they earned the job," he said.
Although many U.S. employers such as Holmes are getting that
message, employment of the blind is far from robust, data show.
There are an estimated 700,000 blind Americans, roughly more
than half of whom are at least sixty-five, and about 50,000 of
whom are age eighteen or under. More than seventy percent of
blind people who are employable are either unemployed or
substantially underemployed.
As a result most must live on some kind of assistance such
as Social Security benefits.
Change is gradual, said Gashel of the National Federation,
whose mantra is that the average blind person can work in any
place of business and maintain a level of performance comparable
to his or her sighted counterparts.
Nancy Dunn agrees. She's Director of Community Relations for
the San Antonio Lighthouse, a sixty-year-old non-profit
organization with two divisions: one that trains the blind for
the work force and one that employs 135 on various contracts,
including manufacturing chin straps for military helmets.
"We're trying to get employers to hire blind people because
it's an opportunity, not just for the person who is blind, but
also for the employer," Dunn said.
Since the 1970's the Lighthouse, which occupies about 56,000
square feet on the South Side at Roosevelt Avenue, has
manufactured more than 250 million mechanical pencils without any
rejections, she said.
"That's a level of quality any company would be proud of,"
Dunn said.
Job Opportunities for the Blind, or JOB, which is supported
in part by the U.S. Department of Labor, tries to link blind
Americans with employers.
Beyond that it provides free consultation to employers
interested in learning more about opening their work place to the
blind.
JOB Director Lorraine Rovig said that beyond securing the
necessary equipment to assist them, blind workers don't want
special treatment. In fact, they want to be held to management's
standards.
"What they ask for is `reasonable accommodation,'" Rovig
said.
USAA has put Tony Wilson in charge of making the diversified
financial services firm reasonably accommodating to employees
with special needs.
His title, appropriately enough, is Job Accommodations
Specialist.
Not only must he consider employees' needs, he removes
barriers for job applicants. For example, special telephonic
equipment for the deaf is available to hearing-impaired
applicants.
Recently, Wilson also has been exploring the latest in
software for blind computer-users.
With the dawn of the Americans With Disabilities Act, even
companies much smaller than USAA are considering what's available
to disabled workers, Wilson said. And they're discovering that
it's doable, he said.
"At smaller companies personnel directors are becoming the
person tasked to comply with ADA," Wilson said.
One beneficiary of Wilson's efforts is Patrick Sturdivant, a
programmer analyst at USAA since 1987.
Sturdivant, twenty-eight, works thirty-eight hours a week,
and his work is so valued that his supervisor sometimes forgets
he's consulting with a man who cannot see.
On Tuesday the two men were weighing the pros and cons of
two separate programs. Sturdivant's supervisor got so involved in
the discussion that he started referring to one of the programs
as "this one."
"I had to ask, `Which one? I can't see,'" Sturdivant said,
calling that an example of how his lack of sight is a "non-
issue."
"I guess there are people who might not know that great
adaptive equipment exists" to make performing the work seem
seamless, he said.
Blind computer programmers worked as long as twenty-five
years ago, the graduate of St. Mary's University said, but "their
job was a lot harder."
All data available to computers or on paper is accessible to
Sturdivant and the four other blind employees of USAA, he said,
adding: "Unfortunately, there are some people who don't know
that."
Felix Frydberg, a sales-team leader at Cellular One, knows
it.
The company hired two blind inside sales representatives
nearly two years ago. In that first year the sales team was named
"Sales Team of the Year," he said.
"We don't target blind people to hire, but if we were to
find more people who are qualified for the job and they happen to
be blind, that's wonderful," Frydberg said.
DON CAPPS HONORED
by Kenneth Jernigan
This has been a year of achievement for members of the
National Federation of the Blind. As a prime example, witness the
appointment of Fred Schroeder to the position of federal
Commissioner of Rehabilitation.
Also witness the case of Don Capps, President of the
National Federation of the Blind of South Carolina and member of
the NFB Board of Directors. When I was at the NFB of South
Carolina convention in mid-August, the growth and progress were
unmistakable. Top state officials were present for the banquet
and other activities, and the reason was not hard to find. Over
350 people attended the banquet, and approximately 400 were
present for the convention.
As longtime Monitor readers know, Don Capps serves as vice
chairman of the board of the South Carolina School for the Deaf
and the Blind. Recently he was honored for his work in education,
but I suspect there was more to it than that. He was also
undoubtedly being recognized for his outstanding personal
accomplishments and for his leadership of one of the most
powerful citizen organizations in the state, the National
Federation of the Blind of South Carolina. Here is the letter
announcing the honor:
August 10, 1994
Dear Mr. Capps:
You have given generously to public education in South
Carolina, and we want to recognize you for this. The South
Carolina Chapter of the National School Public Relations
Association has chosen you as its 1994 Outstanding Leader in
Education. Katie Rice of the South Carolina School for the Deaf
and Blind nominated you for this award.
We give two Outstanding Leader in Education awards annually,
one at the state level and one at the local level. You will
receive our state award, and Mr. Dan Hargett, of MEMC Electronics
in Spartanburg, will receive our local award.
In your honor we have scheduled a 12:30 p.m. awards luncheon
on Friday, September 23rd, at the Capital City Club. We hope you
will be able to attend. The Club is on the 25th floor of the AT&T
Building on Main Street in Columbia. We will present you with the
award at this time. As you accept your award, you may want to say
a few words about why you feel it's important to be involved in
public education and how your contributions have made a
difference in the education of students in South Carolina.
Mr. Capps, you should be proud of yourself for giving so
much to the children of this state. Congratulations on winning
our state award.
Sincerely,
Gregory K. Plagens
Chairman
Outstanding Leader in Education Committee
National School Public Relations Association
[Photo: Dr. Jernigan stands behind a podium, holding up a picture of two hands
reading Braille. Don and Betty Capps sit to his right. Caption: During the
banquet of the National Federation of the Blind of South Carolina's Fiftieth
Anniversary Convention, Kenneth Jernigan displays the picture of Dr. Samuel
Lawton's hands reading Braille, while Don and Betty Capps look on.]
NFB OF SOUTH CAROLINA'S FIFTIETH ANNIVERSARY CONVENTION
by Kenneth Jernigan
Mrs. Jernigan and I went to Spartanburg for the August 12 to
14 fiftieth anniversary convention of the National Federation of
the Blind of South Carolina, and it was all that a fiftieth
anniversary could hope to be. Some 400 people were in attendance,
and the publicity was outstanding. South Carolina is probably our
biggest affiliate with 46 local chapters, three of them being
statewide divisions.
But it is not just the members. It is the activity, the
programs, the public support, and the spirit that make the
organization what it is. And, of course, it is also Don and Betty
Capps.
To celebrate the occasion, a fiftieth anniversary
documentary cassette was played and distributed. It contains
comments from three governors, Senators Hollings and Thurmond,
Dr. tenBroek, and other leaders. A fifty-year commemorative book
was also released and discussed. Entitled Under the Apple Tree,
it gives the highlights and history of the NFB of South Carolina
from 1944 to 1994. Fiftieth anniversary mugs, featuring the NFB
logo in the center of the state of South Carolina, were also
given to convention attendees and placed on sale.
As part of the ceremonies, Dr. Fred Crawford (first director
of the South Carolina Commission for the Blind) was present,
along with his sister Frances, to talk about the early days of
the organization and the situation as it was in South Carolina in
the forties. The same theme was continued in the Presidential
Report given by Don Capps. In line with the theme of continuity,
a presentation was made at the banquet which seemed particularly
fitting. It was an enlarged picture of Dr. Sam Lawton's hands
reading the Braille Bible. Dr. Lawton, of course, was the founder
of the South Carolina organization in 1944 under that famous
apple tree. His daughter, his granddaughter, and his blind great
grandson (Nicolas Stockton) were present for the occasion.
Nick Theodore, current Lieutenant Governor and leading
candidate for governor, was the luncheon speaker; and Earle E.
Morris, Jr., Comptroller General for South Carolina, spoke during
the banquet. Carole Wells, member of the South Carolina
legislature, also spoke at the banquet. Some $6,900 in
scholarships were given at the banquet.
There was an outstanding panel of blind persons who are
succeeding in employment. They were: Carroll Anderson, radio
announcer in his home town of Camden; Lewis Fowler, computer
programmer for Clemson University; and Richard Thompson, claims
representative for Blue Cross/Blue Shield.
Approximately $2,400 in SUN shares (some of it having been
pledged at the Detroit Convention) was raised and sent back to
the National Office. Charters were presented to three new local
chapters: Dillon County, Greater Batesburg-Leesville, and
Abbeville County. A number of awards were given, including a new
Educator of the Year Award.
Officers for the next two years are: Donald C. Capps,
President; Frank Coppel, First Vice President; Lenora Robertson,
Second Vice President; Mike Sutton, Treasurer; and Dorothy
Barksdale, Secretary. The four new board members are; Carey
Burris, Loukeyar Alston, Sheila Compton, and Ronnie Logan.
Special fiftieth anniversary greetings were received from
President Clinton, Senator Hollings, and Senator Thurmond.
Governor Carroll Campbell proclaimed August 13 National
Federation of the Blind Day in South Carolina.
It was an inspiring convention, and a pleasant convention.
Mrs. Jernigan and I headed home with happy memories and a car
full of peaches.
SENIOR BLIND: WHERE TO GO FROM HERE?
by Susan Ford
From the Editor: Susan Ford is one of the leaders of the
National Federation of the Blind of Missouri. She has also been
an active member of the National Federation of the Blind's
Committee on the Senior Blind. She recently sent the following
article on the Committee's work to the Braille Monitor. Here it
is:
Blindness is predominately a disability of older Americans.
In an effort to respond to this fact and meet the needs of this
group, the Committee on the Senior Blind has been meeting at
convention for the past several years. Currently Cathy Randall of
Illinois is its chairperson. Each year important issues are
discussed with many seniors and others who are especially
interested in these matters.
This year we had a rousing discussion about a project to
teach Braille to seniors, which is part of the Colorado Center
for Citizens with Disabilities in Boulder, Colorado, and which
was presented by Tina Blatter and two of her students. There was
also a discussion about macular degeneration and other
degenerative conditions of the eye. The discussion was then
opened to other issues of concern.
A White House Conference on Aging is scheduled to be held in
1995. The opinion was expressed that we need to do our utmost to
take part in mini-conferences at the local and state level so
that blindness and vision loss will not be ignored. If we do not
make our voice heard at this time, others who think less
positively than we do will be the only voices heard and will,
therefore, make future governmental policy for blindness and
aging.
A number of people asked where this committee plans to go.
We have never elected officers or planned activities between
conventions. As people live longer and healthier lives, it is
apparent that in the next thirty years the number of senior blind
citizens will greatly increase. Does this committee want to take
a higher profile in the National Federation of the Blind? Should
it, for instance, make application to become a division? The
younger people present expressed a wish to support the group but
hoped that seniors would take leadership positions if we choose
to take a higher profile. All present agreed that our primary
concern is to improve services to senior citizens who happen to
be blind, and currently the agencies which serve seniors are not
satisfying this need.
We seek the views of Monitor readers who want to become an
active part of this committee. Is it time to become a formal
division? Would it be better to remain a committee? Should we
devise projects and activities between conventions?
The group generally agreed that there are needs pertaining
to the senior blind, and there is a good deal of interest in
addressing them. If you want to assist in the development of this
group, please contact Cathy Randall at 11 Pitner Place,
Jacksonville, Illinois 62650; or Harry Bennett at 2116 Henry
Avenue, Fayetteville, North Carolina 28306.
RECIPES
From the Editor: This month's recipes come from Montana. The
affiliate has been collecting recipes for a large-print cookbook,
and most of the following have been chosen from this collection.
CORNISH PASTIES
The pasty (rhymes with nasty) originated on the west coast
of England as a tin miner's portable lunch--a small envelope of
pastry, pointed at both ends and designed to be carried in the
pocket. Old-timers will tell you the pasty arrived in Butte along
with the first Cornish housewives, who followed their husbands
into the camp direct from Cornwall. Long favored in the miner's
lunch bucket, the pastry-wrapped meal of meat and vegetables was
an ideal way for the Cousin Jennie to provide a hearty meal for
the hard-working Cousin Jack. As the miner unwrapped his lunch,
he would fondly refer to the pasty as a "letter from 'ome." Its
popularity spread quickly throughout the camp, and today the
pasty is as much a part of Butte as the Berkeley Pit.
While Butte is inclined to claim the pasty as its very own
for the Irish, Cornish, Welsh, and Italian miners, one Cornish
authority wishes to point out, "Any place in the world where two
or more Cornishmen are gathered, there is the pasty--with one
important variation: the American form of pasty calls for diced
meat; at home in Cornwall, never! It is always sliced."
There is an old Cornish saying that goes, "The Devil is
afraid to come to Cornwall for fear of being baked into a pasty."
There is also another old Cornish saying, "Only a true Cornish
woman can make a proper pasty." Perhaps the following recipes
will serve as encouragement for those who have never mastered
this culinary feat. President Maurer reports that this delicious
dish was served with brown gravy at the 1993 Montana affiliate's
convention banquet. At his request then-affiliate-President John
DeHaas collected this lore and offered these recipes. Here are
two of them. The first comes from Betty Aultman:
Filling:
skirt of flank steak or loin tip
potatoes
onions
salt and pepper
Pastry:
3 cups flour
1 cup lard
cold water or milk
1 teaspoon salt (added to flour)
Method: Cut lard into flour using a pastry blender until it
resembles coarse meal. Add only enough water to make pastry stick
together. Roll out rounds to size desired for each pasty. Begin
by layering sliced potatoes on half the round, then sliced onion,
salt and pepper to taste; next add a layer of meat (sliced or
diced) and more salt and pepper; add another layer of potatoes,
then onions, and more salt and pepper. Top the filling with a pat
of butter. Dampen edges of dough and pull it over and up,
gathering and crimping across the top to seal. With sharp knife
cut a vent in the top. Brush pasties with a mixture of 1 egg yolk
and 1 tablespoon water before baking. This seals in the juice and
gives the pasties a golden brown color. Pasties made with lard
might otherwise be white after baking. Bake at 400 degrees for 15
minutes; then at 325 for 1 hour.
Melt 1 teaspoon butter with 1 tablespoon water and pour
twice into vent during last 15 minutes of baking.
HOT CORNISH PASTIES
from Gamers Confectionery
Founded in 1905, this restaurant in Butte is one of the
oldest business concerns in the young state of Montana. This
version of the Cornish Pasty has been a favorite with Gamers'
customers for a half century.
Filling:
1 pound sirloin tip
3 raw potatoes, cut fine
3 green onions, cut fine
salt and pepper to taste
Pastry:
4 cups flour
1 cup lard
1 ounce butter
2 teaspoons salt
pinch of baking powder
Method: Cut steak in small cubes, add vegetables and
seasonings. Mix well, and set aside. Cut shortenings into flour
and add enough cold water to make a stiff dough. Roll out about
1/8-inch thick and cut 6 circles about 6 inches in diameter. A
saucer is a good guide. Into the center of each circle put a
mound of filling ingredients. Moisten around the edge of the
pastry and press halves together at the edges with a fork. Brush
each with a mixture of 1 egg and 1 tablespoon cream, beaten
together. Make a vent in each to let steam escape. Bake at 425
degrees for 1 hour. Serves 6.
YOGURT PIE
by Helen Cowles
Helen Cowles of Bozeman has been a member of the Montana
affiliate since 1980. In 1990 she received the Keith Denton Award
given by the affiliate to the member who has contributed most
during the previous year. She also received the Bozeman KBOZ
Volunteer of the Day Award in 1990.
Ingredients:
1 ready-made graham cracker crumb pie crust
1 8-ounce carton of Cool Whip
2 8-ounce containers vanilla yogurt
2 cups strawberries
Method: Fold together sliced strawberries with yogurt and
Cool Whip. Fill pie crust and freeze several hours. Variations:
use lime, lemon, or orange yogurt for the pie instead of vanilla
yogurt and fold in fresh fruit.
MONTANA SWEET AND SOUR BEANS
by Nancy Wheat
Nancy Wheat of Dillon, Montana, has been a Federation member
since 1991, joining when she attended the Summer Orientation
Program. In the past year she has helped organize the newly-
formed Beaverhead Chapter. Nancy has been married fifty-nine
years and lives on a ranch in Montana for six months of the year
and in Hawaii for the remainder of the time.
Ingredients:
1 large can pork and beans
1 can Seaside lima (yellow) beans
1 can green lima beans, drained
1 can red kidney beans
1 can cut green beans, drained
2 pounds sliced bacon
1/2 large onions, chopped
/2 cup catsup
1 cup brown sugar
1/2 cup vinegar
garlic powder or buds
pepper to taste
Method: Cut bacon into small pieces and fry together with
the onions. Drain well. Put into large casserole with beans. In a
small bowl mix catsup, brown sugar, and vinegar. Season with
garlic powder or garlic buds. Pour over beans and bacon; stir
thoroughly but gently. Sprinkle with pepper to taste and bake at
300 degrees for 4 to 5 hours. This may be prepared the day before
and cooked on the day it is to be used. It also does well in a
crock pot on low for 8 hours.
BRAISED SWISS STEAK
by Betty Lou Berg
Betty Lou Berg of Butte is currently Secretary of the
Montana affiliate. In the 1994-95 school year Betty Lou will be a
Braille tutor for a Butte public school student. For recreation
she enjoys knitting and pursuing her hobby of geneology.
Ingredients:
1-1/2 pounds round steak
3 tablespoons flour
2 tablespoons vegetable oil
1/2 cup grated carrots
1/2 cup chopped onion
2 tablespoons chopped parsley
3 whole cloves
2 bay leaves
1 teaspoon salt
1/2 teaspoon liquid gravy
1/4 teaspoon dried thyme
1/8 teaspoon pepper
1 cup water
Method: Wipe steak with damp paper towels. Coat with 2
tablespoons flour. In hot oil in large skillet brown steak well
on both sides (15 to 20 minutes). Add onion, carrot, parsley,
cloves, bay leaves, salt, gravy seasoning, thyme, pepper, and
water. Bring to a boil, then reduce heat and simmer, covered, for
2 to 2½ hours. Add more water during cooking time if needed.
Remove steak to serving dish. Combine remaining 1 tablespoon
flour with 1/4 cup water. Stir into liquid in the skillet and
bring to a boil, then reduce heat and simmer 3 minutes. Remove
cloves and bay leaves, and pour over steak to serve.
BORSCHT
by Marguerite Boehler
Marguerite "Sis" Boehler was one of the organizers of the
Missoula Chapter and has been President for four years. This
recipe comes to us as a Russian soup that migrated from Germany
to this country with her husband's family.
Method: Make a spice bag using one onion and a couple of
good-sized pinches of pickling spices tied up in a piece of
cheese cloth. Put in soup kettle with 2 or 3 knuckle bones and 2
to 3 pounds of brisket of beef or boiling beef, a couple of bay
leaves, salt and pepper. Cover with water and cook several hours,
until the meat is tender. Shred a small head of cabbage. Dice or
cut into shoestrings about 10 carrots and add, together with 2
cans of shoestring beets--juice and all. Sieve 1 can tomatoes
into this. After this has cooked until vegetables are tender, add
4 or 5 peeled and cubed potatoes. When the potatoes are done,
remove soup from heat and allow to cool. Stir about ½ cup sour
cream (or ½ cup whipping cream soured with 1 tablespoon vinegar)
into the soup. Serve with hard rolls.
PIEROGI
by Kay Kjellstrom
Kay Kjellstrom has been a member of the Montana affiliate
since 1990. She is a busy wife and mother who has been
instrumental in establishing two 4-H groups for blind children in
Great Falls: one for students at the Montana School for the Deaf
and Blind and the other for blind youngsters attending the public
schools. She actively participates in the Great Falls Chapter.
Kay is a newly-elected member of the Montana affiliate's Board of
Directors. This year Kay received the Montana Golden Rule Award
given by J.C. Penney in recognition of her many contributions.
Ingredients:
1 cup flour
1/4 teaspoon salt
1 egg
1/4 cup water
1/2 cup dry cottage cheese
1 egg yolk
1 teaspoon butter
1/2 cup cooked mashed potatoes
Method: Combine first flour, salt, and egg in bowl. Stir in
1/4 cup water. Knead on floured surface. Roll out thin and cut
into 2-inch squares. Mix cottage cheese, egg yolks, butter, and
mashed potatoes. Spoon 1 teaspoon onto each square, fold into
triangle, and pinch edges to seal. Drop into boiling salted water
in large saucepan. Cook until dumplings rise to surface, then
cook 5 minutes longer. Drain, rinse with cold water, and drain
again. Serve with lightly browned butter. May saute in butter in
skillet and serve with sour cream. Other fillings sometimes used
include rhubarb, prunes, or other dried fruit. Yield: 50
dumplings.
JOHN'S LOW-CAL MILKSHAKE
by John DeHaas
Immediate past President of the affiliate, John DeHaas of
Bozeman has been an MAB member for eleven years. He served as a
Director for eight years and was President for two years. During
much of that time he was also President of the Bozeman Chapter.
This is a favorite summer beverage of John's.
Method: In a blender put 1 cup skim milk and a banana which
has been broken into 3 or 4 pieces. Add 1/2 capful (about 1/4
teaspoon) vanilla extract and blend until smooth. If you want a
thick shake, add a few crushed ice cubes before blending.
Variations: use strawberries, raspberries, or other fruit; use
almond, lemon, rum, brandy, or other extract to suit your own
preferences.
** ** MONITOR MINIATURES ** **
** Two New NFB books Available in NLS Collection:
Two more NFB books are now in the Library of Congress
collection:
The Freedom Bell, edited by Kenneth Jernigan, one cassette.
Library of Congress annotation:
In a collection of essays individuals discuss aspects of
their blindness, and many emphasize the impact that the
National Federation of the Blind has had on their lives. The
title refers to the bell that is rung at the Louisiana
Center for the Blind to celebrate a member's success or an
event that may have meaning for all individuals who are
blind. One essayist describes her relief at shedding self-
imposed limitations and beginning a career.
As the Twig Is Bent, edited by Kenneth Jernigan, one cassette.
Library of Congress annotation:
The National Federation of the Blind presents essays from
individuals who discuss aspects of growing up blind.
Overcoming others' misconceptions about blindness is the
central theme among experiences such as being overprotected
as children, deciding whether or not to use a cane, and
seeking employment. Contributors range from a seven-year-old
boy to the creator of the Braille math code. Many stress the
importance of the National Federation of the Blind in their
lives.
** For Sale:
We have been asked to carry the following announcement:
Latest version of Vocal-Eyes for sale, asking $300 or best
offer.
Bondwell 386SX, 16 MHz notebook computer, 40 MB hard drive
(DOS 6.2, which doubles the hard drive to 80 MB), expandable case
and two charger/electric outlets, one set of rechargeable nicad
batteries included. Asking $800 or best offer. Perfect for use
with an external voice synthesizer. If interested, call Katherine
at (602) 299-6567 or (602) 794-2219.
** WBU International Essay Contest:
To commemorate the tenth anniversary of the founding of the
World Blind Union in 1984, blind and visually impaired people are
invited to participate in an international essay contest on the
subject, "If I Were the WBU President: My Expectations of the
Organization's Role as the Twenty-First Century Approaches"
The following rules apply:
1. It is open to all blind and visually impaired people of
any age and nationality.
2. The definition of blindness to be applied to participants
is the one adopted by the WBU. The visual condition must be
certified by an ophthalmologist.
3. The essays must be at least 1,500 words long, up to a
maximum of 10,000 words, in English, French, or Spanish, in
Braille or in inkprint. They must be signed with a pen name.
4. The essays must have an attached sealed envelope with the
name and address of the author and the certificate of blindness.
The pen name must be written on it.
5. The essays must be received not later than December 31,
1995.
6. The essays must be sent to World Blind Union, World Blind
Union Tenth Anniversary Contest, La Coruna, 18, 28020 Madrid,
SPAIN.
7. There will be three awards: first prize, $1,500 plus
publication of the essay; second prize, $750 plus publication of
the essay; and third prize, publication of the essay.
8. The officers will publicize the composition of the jury
in the course of 1994. The decisions they adopt will be made
public during the Fourth General Assembly, from September 2 to 6,
1996, in Hong Kong.
Note: Article II, Section 3, paragraph (a) of the World
Blind Union Constitution says "`Blind': throughout this
Constitution the term `blind' means blind and visually impaired.
National members shall be entitled by this Constitution to use
their own national definition of blindness."
** Perkins Brailler Wanted:
We have been asked to carry the following announcement:
Wanted to purchase: used Perkins Braillewriter in good
working order. Contact Cheryl Johnson at (701) 852-8595 with
details concerning price information.
[Photo: Portrait. Caption: Marilyn Baldwin]
** Appointment Made:
Wayne Davis, President of the National Federation of the
Blind of Florida, reports that Marilyn Baldwin, President of the
Orlando Chapter, was appointed to the Florida Transportation
Disadvantaged Commission. He reports that it took over two years
for the affiliate to get this appointment. Ms. Baldwin also
chairs the Transportation Committee of the NFB of Florida.
Congratulations to Ms. Baldwin.
** For Sale:
We have been asked to carry the following announcement:
Job Access With Speech (JAWS) software package current
release for sale. To make an offer write or call Agnes G. Cook,
HC01, Box 9, Bluffton, South Carolina 29910; (803) 757-2598.
