The Braille
Monitor
Vol. 37, No. 10 October
1994
Barbara Pierce, Editor
Published in inkprint, in Braille,
on cassette and
the World Wide Web and FTP on the Internet
The National Federation of the Blind
Marc Maurer, President
National Office
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Baltimore, Maryland 21230
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THE
NATIONAL FEDERATION OF
THE BLIND IS NOT
AN ORGANIZATION
SPEAKING FOR THE BLIND--IT
IS THE BLIND SPEAKING
FOR THEMSELVES
ISSN 0006-8829
Contents
Vol. 37, No. 10 October 1994
REFLECTIONS ON RACE, RELIGION, DISABILITY, SEX, AND BROADER ISSUES
by Kenneth Jernigan
BLIND GET
PHONE ACCESS TO NEWSPAPERS THROUGH SYNTHETIC SPEECH
by Barbara Pierce
IN SEARCH
OF GOOD EDUCATION
by Gene Hunter
FAA GIVES THUMBS-UP TO RECORDERS IN FLIGHT
AN AVERAGE
AMERICAN
by Nancy Martin
CONSENSUS
OR LEADERSHIP?
by James H. Omvig
JUMP
by Wayne Davis
VICTORY IN
THE INSULIN BOTTLE BATTLE AT HAND, MAYBE
by Ed Bryant
TECHNOLOGY,
A BLESSING OR A CURSE?
By Jan Bailey
THE STATE
AGENCY FOR THE BLIND: NOT THE ONLY ANSWER
by Loraine Stayer
BLIND, INC.,
MOVES TO NEW LOCATION
by Peggy Chong
WORK ETHIC
OF BLIND 20/20
Sightless Employees Proving Valuable Resource
by Lesli Hicks
DON CAPPS
HONORED
by Kenneth Jernigan
NFB OF SOUTH
CAROLINA'S FIFTIETH ANNIVERSARY CONVENTION
by Kenneth Jernigan
SENIOR BLIND:
WHERE TO GO FROM HERE?
by Susan Ford
Copyright 1994 National Federation of the Blind, Inc.
[LEAD PHOTOS/CAPTION: Each August the Parents of Blind Children Division of the National Federation of the Blind of Maryland conducts a series of Braille Storybook Hours at the Maryland State Library for the Blind and Physically Handicapped. Federationists take turns reading Braille storybooks aloud to a group of blind youngsters who can follow along in their own copies, assisted by blind adults. The program has been a resounding success, and as a result area libraries and schools have now received new Braille books to add to their collections. Pictured here are Sharon Maneki (above) and Paul Flynn (below) reading to this summer's group of young Braille readers.]
[Photo: Dr. Jernigan stands at the podium, holding a plaque up to his shoulder. Caption: Dr. Jernigan displays the Distinguished Service Award plaque at the banquet of the 1994 Convention of the National Federation of the Blind.] [Photo: Doris Johnson stands at the podium, smiling, with one hand on a plaque and holding the microphone in her other hand. Dr. Jernigan stands, smiling, to her right. Caption: Doris Johnson and Dr. Jernigan stand together following his presentation to her of the Distinguished Service Award.]
REFLECTIONS ON RACE, RELIGION, DISABILITY, SEX, AND BROADER ISSUES
by Kenneth Jernigan
The opponents of the organized blind movement have never understood our strength and unity. Failing to comprehend, they have made a mystery of it, hinting at all kinds of sinister controls and machinations. But the secret is no secret, and the mystery is no mystery.
We deal with only one set of issues--those related to blindness. As an organization we deal with nothing else. Moreover, if a thing is not a problem, we refuse to call it one even if somebody insists that it is. Finally, we treat each other like brothers and sisters--not the way some folks treat their brothers and sisters but the way they should treat them. We care about each other; we defend each other; and we consider each other's feelings.
Recently two Federationists (a husband and wife) wrote to me about something I said at this year's National Convention in Detroit. They felt that my comments about Doris Johnson when I presented the Distinguished Service Award to her at the banquet were inappropriate. They felt (and, incidentally, they are white) that the comments were racially insensitive. Despite the attempts of some of our detractors to create a race problem in the Federation, we have never had one, and I doubt that we ever will.
In the circumstances I might have answered these two Federationists superficially or simply have brushed their comments aside, but this is not the way we treat members of the family. These are sincere, thoughtful, dedicated Federationists. They deserved a reasoned response, and I did the best I could to give them one. I also took the occasion to expand the question and to write for a broader audience, you who read the Monitor. Here are the letters and the remarks I made at the banquet:
July 20, 1994
Dear Dr. Jernigan:
Greetings. We are both still catching our breaths after the whirlwind week of convention. We hope you had as wonderful a time there as we did.
We are writing to you concerning the Service Award presented to Doris Johnson at the convention banquet. While introducing her, you described her at length as an unsophisticated "self- effacing" volunteer who cheerfully toiled at "humble" tasks with no expectation of recognition or thanks. In our opinion, the portrait of Ms. Johnson was stereotypical and degrading, like the portrayals of black women that have appeared in the literature for hundreds of years.
Our objection to the language used to describe Ms. Johnson stems from our fear of the repercussions that may come from such racially insensitive comments. It doesn't matter if Ms. Johnson is in fact exactly as she was described; she could even have written the portrait herself. What matters is the political message that such a description sends. We fear that some people may come to the conclusion that the Federation thinks all blacks fit the stereotype of the introduction. This could only lead to a weakening of our organization, both in membership numbers and internal harmony.
Thank you for considering what we have said. We welcome your response if you have time to put it to paper, but all we ask is that when someone is introduced in the future, that the audience not be able to identify without a doubt the race of the person before they step onto the stage.
Respectfully,
cc: President Marc Maurer
Baltimore, Maryland
July 28, 1994
Dear:
Thanks for your recent letter. I have given careful thought to your comments, and it is hard to respond without sounding defensive.
As you know, I am not much for political correctness. What was said of Doris Johnson during the presentation of the award could with equal accuracy have been said of my daughter, who works by Doris's side doing the grueling preparation of seminar and similar meals. Except for the fact that she is my daughter, Marie would also have received a Distinguished Service Award, and the comments would have been the same.
In your letter you say:
"... [A]ll we ask is that when someone is introduced in the future, that the audience not be able to identify without a doubt the race of the person before they step onto the stage."
Surely you are not implying that what I said could not with equal accuracy have been said of a member of the caucasian race, for that would imply that whites are too good to work in the kitchen and that only blacks can do such work--an insult to both races, and a fallacy into the bargain.
Doris's family (people of culture and good taste) were present at the banquet and heartily approved of what was said. In fact, they provided much of the background. They were deeply moved and, I am sure, would be hurt by any reflection on the nature and content of the presentation.
Be that as it may, your letter raises a broader question, one that deserves comment. Let me begin with something that may not on first examination seem relevant to what we are discussing. We do not have a black caucus in the Federation, and I for one will fight to see that we never do. The concept is demeaning to black Federationists. It implies that our black members cannot make it in competition with the rest of us. I have talked with a great many of our black members, and (not withstanding a dogmatic few) I believe the overwhelming majority are as opposed as I am to a separate black bloc.
At times we have had as many as two black national board members (one of them a Vice President) and as many as nine black state presidents, all serving at the same time--not because they were black but because they were dedicated Federationists, who were politically savvy and had fought their way up through the ranks just like everybody else. Of course, we have seven or eight black state presidents today. I haven't counted lately. It doesn't matter.
If every member of the national board and every state president were black, it should not be a matter of concern. It should not, that is, unless color was the reason for the election. By the same token (token, not tokenism) it should not matter if all national board members and all state presidents were non-black--not unless color was the reason. But there are some (hopefully not very many) who would object to either situation.
Some time ago, somebody asked me whether one of our state presidents was black. I said that I didn't know, and I was telling the truth. How would I have known unless somebody had told me? The old tired cliche that "you can tell them by their voice" is not only racist but also provably false. We had a reason not too long ago to fill out a paper concerning the racial composition of our staff here at the National Center for the Blind, and I was told that I had omitted one of our black staff members. This person had worked for us for several years, and I had no idea what his color was. What difference did it make? I couldn't see him; I couldn't tell by his voice; and I had never asked. The people who hire in our organization are blind, and they don't use color as a litmus test.
There is a basic premise in the functioning of the Federation, one that goes back to the very beginning. It is easy to understand, objectionable to a few, and (in my opinion) largely responsible for the harmony and effectiveness we have enjoyed. It is this: we treat each other like brothers and sisters, and we deal with only one issue--blindness. We have black racists, white racists, and mostly neither. We have pro- abortionists, anti-abortionists, and many who don't give a hoot either way. We have right wingers, left wingers, and people who claim they are centrists. We have religionists, atheists, agnostics, and many who don't bother about it. We have elitists, red necks, and plenty of pseudos. We have those who favor women's lib, men's lib, gay rights, the Nation of Islam, the Ku Klux Klan, and Rush Limbaugh. Yet, we live in harmony with each other.
The reason is no mystery. We deal with one issue, blindness- -and we don't impose our non-blindness views on our fellow Federationists. All of us are happy to have the rest of us work in any other cause we like, just so long as we don't intrude that cause into the Federation--and especially just so long as we don't try to make each other discuss it and accept our view of it.
When the Vietnam War was at its height, one of our members (he called himself a dove) wanted us to discuss and pass a resolution condemning the war. I told him I would oppose it.
"Oh," he said, "so you are a hawk!"
"It doesn't follow," I said. "If somebody wants to introduce a resolution supporting the war, I will oppose that, too. More than that: I will oppose discussing the question at all. We are an organization to deal with blindness, not Vietnam--and not anything else." He wasn't very happy with me, but I believe the overwhelming majority of Federationists would have been.
When we were organizing in Florida three or four years ago, one of the members wanted us to go on record as opposing abortion. I was chairing that meeting, and I told him that I not only objected to our adopting the resolution but to discussing it. I told him that before we could consider the merits of the question, the members would have to agree that they wanted to talk about it. I further told him that the members had the right to decide not to discuss an issue. Everybody in the entire meeting except him thought we should not consider the matter, and we didn't--but I know that many of those present felt that abortion was wrong. None of us objected to his holding his view on abortion; none of us objected to his going out and trying to get the rest of society to believe as he did; but we felt that the Federation was not the proper forum.
For my part, the concept of a disability group or caucus in either of the major political parties would be counter-productive and offensive. We are not as helpless and incompetent as that implies, and if the idea should ever take hold, we would likely forever to be limited to minority status and disability matters. This is my personal view, one that may not be shared by other Federationists--and I am content to have it that way.
Having given you this background concerning Federation traditions and practices about race and similar issues, I want to return to the specifics of your letter. When you say that the audience could identify without a doubt the race of the person receiving the award before she stepped onto the stage, I am curious to know how. I have reviewed my remarks and herewith enclose a copy for your examination. As far as I am concerned there is not one sentence or word in the entire presentation which identifies race, with the possible exception of the fact that Doris attended Morgan State University. Even that is not definitive since a few white students now go there.
Was it that she grew up in a poverty-stricken rural area of the South? That is the setting in which I grew up, and so did many others in the Federation, white and black alike. Was it because her family were share croppers? That is no identifier. My family had the same experience, living on somebody else's land. When I was a child, my father cut and hauled telephone poles for a dime apiece, and he often worked from sunup until dark for fifty cents. He milked the cows and did other chores after the day's work. Besides the share of a crop, the pay was often in apples or molasses or whatever else was available. There wasn't enough money to do otherwise.
Is it because Doris did cleaning chores and housework to pay her way through school? When I was a boy, I shined shoes with the same objective. Is it all right for white boys to shine shoes for low pay but not all right for black girls to do similar work? Is it perhaps that Doris came from a large family? My father was the thirteenth child in his family, and I remember a neighbor woman (white, incidentally) who had twenty-one children. Was it that Doris worked in the fields when she was not in school? My brother and all of the other children in our neighborhood did the same thing, and I would have done it too if my family had believed I could instead of thinking blindness was a bar.
Then, if it was not Doris's childhood background, was it her adult experience--her training in home economics and cosmetology, her interest in her church, her volunteer work in hospitals? If not that, was it the description of her work in helping in the kitchen at the National Center for the Blind? Obviously somebody has to cook and clean, and equally obviously the somebody has to be either paid or volunteer. Have we come to the place where it is acceptable for a white male to do kitchen work but unacceptable for a black female to do it?
If I have still not identified the reason why it was obvious to the audience that Doris was black before she ever stepped onto the stage, was it perhaps my description of her attitudes and behavior--that she is modest, self-effacing, unassuming, and willing to work tirelessly without expectation of reward? Surely these characteristics (though admittedly possessed by a shrinking few regardless of race) are admirable, not demeaning. You say that these traits are the stereotype of black women, and I answer: "Not today." Unfortunately the present-day stereotype of the black female is that she is rude, pushy, bad-mannered, long on discussing her rights, and short on considering the rights and feelings of others. Although that stereotype fits some black women (and a great many white ones, too, as well as a lot of males of all races), I think it is false, characterizing only a minority. Humility, good manners, willingness to work, a desire to give, and a spirit of dedication without a corresponding wish for self-aggrandizement are still (even in today's society of skewed values) worth recognizing, praising, and rewarding.
Let me move to another aspect of the situation. How should I have made the presentation? I might have said that Doris was an outstanding leader and that the award was being given to her for that alone. Such a presentation would not have been believable, would not have given pleasure to Doris, and would not have helped the organization. Doris is not an orator, a center-of-the-stage planner and rallier of the troops. She is a solid, hard working member--and she likes it that way. Her contributions are of real value, and the Federation was recognizing that fact and telling her that she is appreciated.
I could have made the presentation in such a way as not to indicate the kind of work Doris does for the movement, but this would have been vapid and inappropriate. I could have talked of her work without mentioning her qualities of humility and avoidance of the limelight, but such a presentation would not have been accurate or complete. Moreover, it would have had racist overtones, implying that a black person cannot be portrayed as gentle and service-oriented while a white person can.
Of course, we could have refrained from giving her the award at all because of the kind of work she does and because of her unassuming spirit. But that seems unfair and counter-productive. It would have been the worst kind of elitism.
Doris Johnson is a rare human being. She is strong without being "pushy." She is humble without being weak, modest without being spiritless. Unlike so many, she does not demand constant petting, nor does she insist on forever being told how great she is. She simply sees what needs to be done, and does it. I wish we had hundreds more like her.
In your letter you say: "It doesn't matter if Ms. Johnson is in fact exactly as she was described; she could even have written the portrait herself." As you reflect on the matter, I hope you will decide that this is not exactly what you meant. It is all very well for us to care about classes of people, but I think it is even more important for us to care about individuals. What Doris wants and how she feels are important factors in the equation. If we move human beings like pieces on a checkerboard to accomplish overall strategies and to satisfy the needs of this or that segment of society, we dehumanize ourselves and the entire process.
You wrote to me in unadorned candor. I hope you are willing for me to do likewise in response. I respect you (both of you)-- and for many of the qualities that earned Doris her award. I hear good things about you and believe you have a great future in the movement. It must be obvious that I have given time and careful consideration to your letter. Think about what I have said, and tell me how you feel about it if you want to. Whatever your reaction, let us work together to make the Federation better and stronger than it has ever been.
Sincerely,
Kenneth Jernigan
President Emeritus
National Federation of the Blind
DISTINGUISHED SERVICE AWARD PRESENTATION: DORIS JOHNSON
Doris Johnson was born and raised in South Carolina, the second of nineteen children--all with the same parents if anybody wants to know. She has always been a hard worker. She worked her way through high school by cleaning the principal's house before classes every morning. She then caught the train and went to school. After getting home, she would work in the fields until dark. (Her parents were share croppers.) After it was too dark to work outside, she would study for school the next day.
After high school Doris went to Baltimore, where she worked her way through Morgan State University, graduating with a degree in Home Economics in 1956. She has always been active in her church and was the secretary of the church Sunday School for many years. While teaching at a Baltimore beauty and barber college, Doris earned the outstanding teacher of the year award on two separate occasions. She also helped prepare many students for their state licensing examination. For many years Doris went to Montebello State Hospital in Baltimore and did the patients' hair as a volunteer.
Let me turn now to Doris's work with the Federation. Because she is quiet and unassuming, few people know how much she does. She does over a thousand hours of volunteer work every year at the National Center for the Blind. She does everything from erasing tapes and labeling cassettes to manning (or, if you like, "womaning") NFB booths at local events. In the kitchen she is invaluable. She comes early and stays late, until the last dish is done. When there is a seminar or a meeting of any other kind, Doris is always willing to help in whatever way she is needed. Doris, you exemplify the spirit of our movement, the best that is in us, and the essence of service to others. I have here a brass plaque on polished walnut wood that I want to present to you. It is the tangible manifestation of the love we have for you and the appreciation of what you are and what you do.
NATIONAL
FEDERATION OF THE BLIND
DISTINGUISHED SERVICE AWARD
PRESENTED TO
DORIS JOHNSON
YOUR ENERGY
AND COMMITMENT ARE FREELY AND ABUNDANTLY GIVEN
YOUR DEVOTION AND SPIRIT INSPIRE YOUR COLLEAGUES
No task
is too humble
No hour too early
No job too much
THE BLIND
OF THE NATION GIVE YOU THIS AWARD
WITH LOVE AND APPRECIATION
JULY 6, 1994
[Photo: Mr. Maurer stands next to computer equipment, reading Braille, with several people standing and listening to him. Caption: President Maurer shows the NEWSLINE for the Blind equipment to several reporters following a press conference.]
BLIND GET PHONE ACCESS TO NEWSPAPERS THROUGH SYNTHETIC SPEECH
by Barbara Pierce
Most people would have said that Thursday morning, August 4, 1994, was an ordinary day. Americans across the country prepared for work on a hot summer morning, giving little thought to the newspapers they glanced through over their coffee. But for blind Americans the day marked a turning point--for the first time in history blind people in one city had full access to the day's printed news and features as soon as their sighted colleagues. For early that morning the National Federation of the Blind's specially ordered, super-fast Pentium 90 computer received a command to call a computer in North Carolina and download the entire text of that day's edition of USAToday. The computer then prepared the material for telephone access. With that the deed was done. Until now the handful of dial-up newspaper services around the country have depended on volunteer readers to produce the audio text accessed by blind telephone callers. This has necessarily meant that the material was not available to them until the newspaper had been printed and the volunteers had read it aloud into a computer in the recording studio's soundproof booths.
Now, in the greater Baltimore/Washington area, registered blind readers can listen to today's news this morning, read by a computer. How good is the speech? It is generated by Digital Equipment Corporation's DECtalk speech boards--generally agreed 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.
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.
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]
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.]
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
[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 InsulinTactile Cue(s)humanone round tactile cuehuman semi-synthetictwo round tactile cuespurified porkone squareporkone long rectangle (vertical or horizontal)beef/porktriangle & long rectanglebeefone 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 treatme