Vol. 37, No. 9 October
Barbara Pierce, Editor
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The National Federation of the Blind
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NATIONAL FEDERATION OF
THE BLIND IS NOT
SPEAKING FOR THE BLIND--IT IS THE BLIND SPEAKING FOR THEMSELVES
Vol. 37, No. 9 October 1994
REFLECTIONS ON RACE, RELIGION, DISABILITY, SEX, AND BROADER ISSUES
by Kenneth Jernigan
DISTINGUISHED SERVICE AWARD PRESENTATION: DORIS JOHNSON
PHONE ACCESS TO NEWSPAPERS THROUGH SYNTHETIC SPEECH
by Barbara Pierce
OF GOOD EDUCATION
by Gene Hunter
FAA GIVES THUMBS-UP TO RECORDERS IN FLIGHT
by Nancy Martin
by James H. Omvig
by Wayne Davis
THE INSULIN BOTTLE BATTLE AT HAND, MAYBE
by Ed Bryant
A BLESSING OR A CURSE?
By Jan Bailey
AGENCY FOR THE BLIND: NOT THE ONLY ANSWER
by Loraine Stayer
MOVES TO NEW LOCATION
by Peggy Chong
OF BLIND 20/20
Sightless Employees Proving Valuable Resource
by Lesli Hicks
by Kenneth Jernigan
NFB OF SOUTH
CAROLINA'S FIFTIETH ANNIVERSARY CONVENTION
by Kenneth Jernigan
WHERE TO GO FROM HERE?
by Susan Ford
Copyright 1994 National Federation of the Blind, Inc.
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.
cc: President Marc Maurer
July 28, 1994
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.
National Federation of the Blind
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.
FEDERATION OF THE BLIND
DISTINGUISHED SERVICE AWARD
AND COMMITMENT ARE FREELY AND ABUNDANTLY GIVEN
YOUR DEVOTION AND SPIRIT INSPIRE YOUR COLLEAGUES
is too humble
No hour too early
No job too much
OF THE NATION GIVE YOU THIS AWARD
WITH LOVE AND APPRECIATION
JULY 6, 1994
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.
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.
July 15, 1994
U.S. Department of Transportation
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.
Peggy Pinder Elliott
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.
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:
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.
Anthony J. Broderick
Associate Administrator for
Regulation and Certification
U.S. Department of Transportation
Federal Aviation Administration
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.
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.
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
August 19, 1994
Barry Baum, Director
Customer Service Training
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.
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!
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.
by Wayne Davis
From the Editor: Three years ago my older daughter began talking about wanting to skydive. Despite the fact that I could remember a time when I would have given a good deal to jump from a plane, I was horrified! This was my child, and I was certain that the parachute would not open properly. She chose the Sunday morning of the Ohio state convention as the time for her first jump. She probably thought I could not simultaneously chair a convention session and worry about her. She was wrong.
She managed a total of three jumps before her cash ran out that year and I could begin breathing again. But she convinced me before it was over that the experience really was exhilarating and that those who choose to engage in the sport have not necessarily taken leave of their senses.
Wayne Davis is the President of the National Federation of the Blind of Florida. He shares my personal views about jumping out of airplanes with nothing more substantial than a few yards of nylon to offset the power of gravity. But he, too, has learned that not everyone sees things the way we do. And as with so many other areas of life, blind people represent a cross section of the general population with respect to skydiving. Here is Wayne's account of a jump made by two Florida Federationists:
As President of the National Federation of the Blind of Florida, I get all kinds of phone calls. Around the second week in May of this year Joseph B. Naulty, who serves as President of the Broward Chapter of the NFB of Florida as well as being chairperson of our statewide Deaf-Blind Committee, called one evening wanting me to join him in jumping out of an airplane. Joe is fifty-nine years old, and I am fifty-two. Neither of us had ever done anything of this nature before, so I declined the offer to join him. I assured him that, if he decided to go forward with his project, my prayers and best wishes would go with him, but the rest of me would be busy on the ground--no matter what day the jump was scheduled.
The day it actually happened was June 1. October Lowe, who is also a member of the Broward Chapter, decided that she would join her chapter president in jumping out of a plane. I didn't know Tobie, as she is called by her friends, nearly as well as I know Joe, but I knew that she is an acrobat and a dancer and much younger than Joe, so I reasoned that, if they went through with the jump, Tobie would probably be released from the hospital months before Joe.
"I am doing this," Joseph Naulty told the man with the video camera, "because I am a deaf-blind person. I am state chairman of the Deaf-Blind Committee of the National Federation of the Blind of Florida, and I want the public to see us as individuals. I am just like any one else. I have a lovely wife, nice sons, a beautiful home, and even a mortgage."
Then Joe and Tobie got into separate aircraft, each with a jump master, who would jump in tandem with them, and away they went. The beginner wears a parachute harness attached to the jump master, who is the one actually wearing the parachute. Both Tobie and Joe were instructed about what they needed to do during the jump so that neither they nor their jump masters would get hurt.
"The doors had been removed from the airplane," Joe told me. "You could hardly hear yourself think. The guy I was jumping with told me to kneel down. He stood behind me and snapped his parachute harness to mine. Then he told me to hang my feet out the open door. We counted to three together, and then we just rolled forward out of the plane."
They jumped from 12,500 feet, which is over two miles high, and did what is called free fall for 10,000 feet before opening the parachute. Free fall is just what it sounds like--you fall with nothing slowing you down. "The guy told me," Joe said after the jump, "that after leaving the plane I should count to fifty-five, and at that point I would feel the parachute open. I counted to fifty-five three times before I felt the shoot open."
I have watched the video of Joe's jump a half dozen times, and each time it seems more frightening than the last. When they left the plane, they fell end over end for several seconds. Joe said he was surprised at how cold it was up there. Because of Joe's hearing problem, he had worked out signals with his jump partner so that the man could instruct him about what he needed to do on the way down. The man tapped Joe on the arms, which was the signal for Joe to spread his arms and arch his back. Once this was done, they were in a position much like that of a bird in flight. Keep in mind, though, that they were falling like a rock all the time. Joe said that the feeling was really peaceful once the fall had been stabilized. "When the parachute opened," Joe said, "I thanked God because I knew we were going to make it."
The time from leaving the plane to hitting the ground was just over six minutes. Both Tobie and Joe made it just fine. I respect their courage and resolve, and I do believe that people who learn about their jump will look at blind men and women in a different way because of what they did. Am I sorry I didn't jump with them? Well, as I had told Joe, I was going to be busy on that day. Before they went up, I asked my wife Carmen if she wanted to jump with them, but she assured me that she was going to be busy too.
We can't all jump out of an airplane, but we can all put our best foot forward and do the very best we can at what we do. Whenever some task comes up that seems too hard for me to undertake, I will remember Tobie and Joe, and doing so will help me find the courage and strength to do the things I need to do.
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:
July 14, 1994
To: Mr. Marc Maurer and Dr. Kenneth Jernigan
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.
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:
April 28, 1994
Randall L. Tobias
Chairman of the Board and Chief Executive Officer
Eli Lilly and Company
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.
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 treatment centers in the U.S., all rehabilitation centers for the blind, hundreds of radio stations across the U.S., and thousands of diabetics, both blind and sighted. Leaders of the Diabetics Division place copies of the Voice in places of public patronage all across the U.S., and we have subscribers in many foreign countries. As Voice editor, I exchange copies with all other publications dealing with diabetes issues in the U.S., and I will grant reprint permission to any of them.
More than two years ago, when I began investigating tactile marking of insulin vials, insulin industry executives indicated to me that changes such as those I have described were being considered, but I have seen neither progress nor willingness to move forward. How much longer must blind diabetics wait? Surely insulin-dependent diabetics deserve to know what the industry upon which they must depend is planning for their welfare. Although the FDA has indicated interest and willingness, there has been no apparent movement from the manufacturers. If such measures as I have described are truly under consideration, please let me know.
The Diabetics Division of the National Federation of the Blind includes thousands of blind diabetics who live independently and measure their own insulins. We have many blind individuals, both instructors and lay people, ready and willing to help you develop practical systems of non-sighted insulin marking. Our lives depend on the good judgment we bring to diabetes self-management. We are ready to offer this resource to you.
To expedite changes such as I have described, formal application to alter the regulations must come from the insulin manufacturers, who will have to agree to standardize markings. Once you request a specific amendment to the relevant section of the CFR, Health and Human Services will commence regulatory review, as will the Office of Management and Budget. The FDA has indicated that exemption is possible, pending completion of this regulation process. No good is served by further delay.
I and members of the Diabetics Division stand ready to assist you. Please feel free to contact me if you have any questions.
Thank you in advance for your response.
Ed Bryant, President
National Federation of the Blind
Eli Lilly's response was prompt. Within several days, Mr. Michael Querry, Diabetes Care Business Planning Associate, had contacted me by phone, to set up a meeting. Shortly after his call, I received the following communication:
May 27, 1994
Dear Mr. Bryant:
Your recent letter to Randy Tobias, Chairman of the Board and CEO, was forwarded to me for response. I appreciate your willingness to share your ideas with us.
During the past year Eli Lilly has discussed with the FDA a proposal for worldwide standardization for color coding of insulin formulations as well as identifying marks to better recognize formulations. We have a meeting planned with the World Health Organization, International Diabetes Foundation, European Association for the Study of Diabetes, American Diabetes Association, FDA, manufacturers of insulin formulations, and syringe manufacturers to discuss these proposed guidelines for implementation on a worldwide basis.
We will also discuss tactile recognition methods to ensure better identification for visually-impaired individuals. If we can get agreement, the insulin and syringe manufacturers are prepared to move forward following this meeting.
While it seems as if it has taken a long time--and it has--we are beginning to make some progress and show signs of implementing some of your recommendations. Should you have additional questions about our progress, please feel free to call me at (317) 276-3204.
Larry Ellingson, Executive Director
Global Diabetes Care Planning
Eli Lilly and Company
cc: Mr. R. Tobias
When I sent my letters to the CEOs of Lilly and Novo Nordisk, copies of all correspondence were supplied to the FDA. Because my previous contact, Howard Spungen, had not replied to my most recent queries, the following was sent to Dr. David Kessler, Commissioner of the FDA.
June 6, 1994
Dr. David A. Kessler, Commissioner
Food and Drug Administration
Dear Commissioner Kessler:
Over the past several years the Diabetics Division of the National Federation of the Blind has been working to rationalize insulin packaging, to serve the needs of insulin-using diabetics better. Since early 1992 members of my organization and I have been in contact with your office and with the CEOs of Eli Lilly and Novo Nordisk, the manufacturers of all insulin sold on the U.S. market.
On April 28 of this year I contacted both Eli Lilly and Novo Nordisk, and on May 2 I sent copies, with a cover letter, to Mr. Howard S. Spungen, Consumer Safety Officer, FDA. Your office also received copies of all correspondence.
As of this date Novo Nordisk has failed to respond. Your organization has also been silent. Eli Lily's reply (enclosed) speaks of a proposal for worldwide standardization for color coding of insulin formulations and a meeting of industrial and health care professional organizations (WHO, FDA, ADA, International Diabetes Foundation, European Association for the Study of Diabetes, Lilly, Novo Nordisk...) to discuss such a proposal. Significantly, no consumer organization appears on the list. Why is that?
We, the Diabetics Division of the National Federation of the Blind, are the largest group dealing with blindness and diabetes. Not doctors, industrialists, or bureaucrats speaking for diabetics, we are diabetics speaking for ourselves. We are those who must use insulin. We have a great deal to offer the decision- making process. Our news magazine, Voice of the Diabetic, now reaches more than 99,000 people, in all U.S. states and territories, and twenty foreign countries. Can you provide one good reason why we have not been invited to the above meeting?
In my experience, products and policies established for blind diabetics, without input from blind diabetics, are at best expensive exercises in irrelevance and all too often make matters worse. This plan to color-code insulin labels to help the blind is surely one such example! Please ask us. We use insulin.
Since I haven't heard from Mr. Spungen, I'd appreciate hearing from you. As detailed in my previous correspondence, the problem of insulin vial misidentification by blind and visually impaired diabetics deserves serious attention and positive action. Members of our organization have years of experience dealing with this issue. We are at your disposal.
Ed Bryant, President
Diabetics Division, NFB
On June 12, 1994, at the Annual Meeting of the American Diabetes Association in New Orleans, I met with Mr. Michael Querry, who had contacted me from the business office of Eli Lilly and Company. Mr. Querry informed me that Lilly is exploring many options, one of them being insulin vial caps of different shapes and colors. He agreed with me that blind, insulin-using diabetics should evaluate any tactile-marking system before it is placed in production, and he promised that Eli Lilly would work with the Diabetics Division of the National Federation of the Blind.
When he told me that Lilly is looking to achieve a world standardization of insulin packaging, I reminded him of the recent (and in parts of the world unfinished) struggle to get U100-strength insulin accepted as a standard. Instead of putting that process on the international bargaining table, the insulin industry made the U.S. market an example--and the rest of the world is gradually falling into line. I suggested that Lilly do it again--develop state-of-the-art tactile packaging for the American market, and let the enormous influence of U.S. medicine carry the message to the rest of the world.
On June 21 and 22 I spoke with Mr. John Short, Consumer Safety Officer, Division of Metabolic and Endocrine Drug Products, Food and Drug Administration, Rockville, Maryland. He informed me that, "The decision has been made," that because "someone who was totally blind would have someone else taking care of medication for them," to take the needs of the blind into account would be pointless, a scheme of color-code insulins was about to be submitted for public comment!
According to Mr. Short, he had met with representatives from the insulin industry several months before to work out this latest initiative. No consumer groups were involved in the fact-finding process, and from his statements about blind folks not a great many facts were found either. Kenneth Jernigan, President Emeritus of the National Federation of the Blind, writes in If Blindness Comes, "Loss of sight need not be a tragedy, but it can be--and probably will unless correct information is available."
This time the FDA clearly didn't do their homework. They need to reopen the fact-finding process, and their policy makers need to shed their antiquated, insupportable, false, and discriminatory notions about the abilities of blind people. The time when disabled people were chained to the bed is long since over. Blindness is not synonymous with inability!
Novo Nordisk's total silence is hard to figure. A drug company depends on money from its customers. Are they that unconcerned? What don't they get?
They are hardly unaware of the issue. Their U.S. office received the letter published above May 2, three days before Eli Lilly received theirs. On June 11, 1994, Patrick M. Quinn, M.D., Novo Nordisk's Director of Medical Marketing, happened on the Diabetics Division's booth at the ADA convention in New Orleans. There he told me he had just attended a meeting between his company, Eli Lilly, the FDA, and others, where insulin packaging reform was discussed. Yet Novo Nordisk seems unwilling to address blind diabetics directly. They're ready to think for us but not to ask us. This must change.
If you are an insulin-dependent diabetic and have any input on this matter, please make your thoughts known to FDA Commissioner Kessler (at the address shown in this article), and please send me a copy at the Voice of the Diabetic, 811 Cherry Street, Suite 309, Columbia, MO 652013.
This project will continue until the insulin industry and the FDA make the necessary changes. Voice of the Diabetic will keep you abreast of the latest developments.
June 22, 1994
John Short, Consumer Safety
Division of Metabolic and Endocrine Drug Products
Food and Drug Administration
Dear Mr. Short:
Attached is a copy of my letter to the insulin manufacturers. This is the item I promised to fax to you.
I appreciate your calls to my office on June 21 and 22, regarding proposed regulations for insulin vial coloring. The attached letter details my objections to such an approach. It is apparent that the blind were totally excluded from the planning process because of the antiquated and insupportable notion that blind diabetics are incapable of self-management. Your perception that "someone who was totally blind would have someone else taking care of medication for them," is totally vitiated by thousands of blind diabetics, myself included, who have been successfully self-managing our diabetes for decades. All we ask is the means by which we can distinguish between insulins without sight. This would aid our safety and reduce dosage errors. We have everything else under control.
The time when disabled people were chained to the bed is long since over. Blindness is not synonymous with inability! Such discrimination against the disabled led to passage of the Americans With Disabilities Act in 1990.
Because the FDA clearly did not do its homework in this matter, I asked you to consider reopening the fact-finding process but was told, "The decision had been made." Such truculence would not be unexpected from the insulin industry, which of course has a vested interest in doing the least, but why is it true that the most untenable positions are the most vigorously defended?
Many manufacturers and vendors offer adaptive products for accurate non-sighted drawing and mixing of insulins. As discussed, I am mailing to you a copy of the "Resource List of Aids and Appliances," and a Voice of the Diabetic, both published by the Diabetics Division of the National Federation of the Blind.
Your response would be appreciated.
Ed Bryant, President
Diabetics Division, NFB
July 11, 1994
Mr. Ed Bryant, President
Diabetics Division, NFB
Dear Mr. Bryant:
This is in response to your letter of June 6, 1994, addressed to Dr. David Kessler, regarding your concern that the interests of the blind have not been considered in insulin labeling and bottle design in order to facilitate identification by blind people. Because this Division handles issues relating to insulins, your letter has been forwarded to us for reply.
During telephone conversations on June 21 and 22, 1994, between yourself and Mr. John Short of this Division, Mr. Short explained to you the efforts of the FDA to make insulin packaging more uniform and distinctive. Mr. Short described our plan to publish in the Federal Register a Notice of Proposed Rulemaking which would suggest: 1) colors for specific dosage forms of all insulins (animal and human) and 2) the use of distinctive symbols to identify the source of the insulin, i.e., small silhouettes of a pig, cow, pig/cow, or human for pork, beef, pork/beef, and rDNA/semi-synthetic sources, respectively. He also said that publication of such a document would allow all interested parties to be part of the rulemaking procedure by expressing their special interests, and then FDA would evaluate all the comments and respond to them in aggregate and come to a final conclusion as to container label and carton format.
During your conversation with Mr. Short you indicated that you were pleased with our initiative but none of the changes to be proposed in the rulemaking procedure would help blind persons readily distinguish between their fast-, intermediate- and slow- acting insulins. You suggested he look into some of your recommendations for accommodating the blind diabetic in your previous communications to Dr. David Kessler and Mr. Howard Spungen at FDA. Mr. Short promised that we would look into them to see if any might be included in the proposed rulemaking. Subsequent to your conversations with Mr. Short and in response to your letter dated June 22, 1994, we have decided to hold meetings with interested organizations, including the National Federation of the Blind, and the insulin manufacturers to determine what can be done to assist blind diabetics. We hope the resulting recommendations in this regard can be included in the proposed rulemaking.
As for the international meeting you refer to in your letter, FDA was not involved in the development of the meeting. It was organized by the International Diabetes Federation as a satellite meeting on July 11, 1994, during the American Diabetes Association annual meeting in New Orleans. FDA learned indirectly that color coding of insulins would be discussed at the satellite meeting and offered to present (and was accepted) the proposed scheme conveyed to you by Mr. Short. Please contact the International Diabetes Association for further information concerning that meeting.
Thank you for your interest in this very important subject.
Solomon Sobel, M.D.
Director, Division of Metabolism and
Endocrine Drug Products
Center for Drug Evaluation and Research
If you or a friend would like to remember the National Federation of the Blind in your will, you can do so by employing the following language:
"I give, devise, and bequeath unto National Federation
of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230, a District of
Columbia nonprofit corporation, the sum of $_____ (or "_____ percent of
my net estate" or "The following stocks and bonds: _____") to
be used for its worthy purposes on behalf of blind persons."
by Jan Bailey
From the Editor: Jan Bailey is one of the leaders of the National Federation of the Blind of Minnesota. She has recently entered the world of technology and has lived to tell the tale. Here is her story as she tells it, together with some hard-won advice for those contemplating this step:
In November, 1992, I was plunged into the world of technology. I work as a rehabilitation counselor for State Services for the Blind in Minnesota. Our agency had received some extra money at the end of the fiscal year, and the powers that be decided to computerize the agency. They also decided to buy technology for blind employees. I was never consulted about what technology I would need, but nearly everything imaginable was ordered for me.
About two years before I started learning how to use all of this equipment, I had been urged by several people to ask the agency to buy some adaptive equipment to help me be more independent on my job. The problem was that I didn't really know what I would use it for. Several of my computer programmer friends had told me you should never buy a computer until you know what you want it to do for you; and, since I didn't know, I had never done anything about it.
On November 10, 1992, my first piece of technology arrived. It was the Braille 'n Speak. The reason I so clearly remember the date is that we had the next day, Veterans Day, off. I took the Braille 'n Speak home with me along with the tutorial tapes and taught myself how to use it. In two days I could create documents, edit them by inserting and deleting, and use the calculator and clock. I began entering my client files, phone numbers, addresses, case dictation, calendar, disability codes, facility fee charges, list of clients by counties I serve, etc., into the Braille 'n Speak. I soon found it invaluable, because I'm out of the office a lot, and it was difficult for me to find a good system for keeping a calendar. I used to write things down on sheets of paper, and then I would have to search through my notes to find bits of information I needed.
If everything else I received had been as easy to learn as the Braille 'n Speak, I would have been in great shape. The Braille Blazer was easy to learn to operate, but when I entered the world of computers, it was a different story. I started with the laptop. I knew nothing about a computer. I have a Toshiba laptop with an Accent speech board and JAWS as the screen review program. The jack for the speaker kept breaking until someone in our agency's engineering department adapted it. But this occurred only after months of frustration. When I started using the computer, I knew nothing about DOS (the Disk Operating System), so things were very difficult. I took a couple of courses from our local community education program, and the agency paid for a reader for me. I felt it would be easier to learn that way, because I was still having trouble using JAWS, and I knew the instructor at the school wouldn't know how to help me. I decided it would be easier to learn about DOS and WordPerfect and then adapt what I had learned for use with JAWS.
Next my desk-top computer was set up. I have JAWS in that computer as well and use my Braille 'n Speak as a synthesizer. I also have an eighty-cell Navigator, and I use Braille most of the time on my desk-top, because I fill out a lot of forms such as plans, financial inventories, and worksheets to generate authorizations that my secretary then prepares. I find it much easier to fill in a form by using Braille. I also have an Arkenstone reader for use with my computer. First I couldn't get JAWS to talk on the desk-top. Then the card in the scanner was faulty, and it would short out the computer. Then, when I sent files from my Braille 'n Speak to the desk-top computer, my computer would lock up and sometimes short out. It was very frustrating, and there were days I wanted to throw all my technology right out the window, but I persisted. I also have a print printer in my office and the Braille translator program Megadots for translating my documents into Braille to be printed on my Braille Blazer.
If it had not been for my many computer-literate friends who helped me, I never would have learned how to use all these devices. I still don't know everything there is to know about them, but I can do the things I need to do. I'm much more independent on my job. I can read much of my own mail on the scanner and can fill out my own plans and other forms, so I use much less reader service. But I want to say as clearly and forcefully as I know how to that without good Braille skills none of this technology would have done me any good. I needed Braille to take notes and read the Braille manuals I was given, and I certainly need Braille when my technology breaks down--and it always does break down, usually when you need it the most. You have to let yourself rely on the technology, but you still have to have backup systems for when it breaks down. When you use technology, you have to be willing to make many phone calls, find solutions to the many problems you encounter, and spend many hours outside of work studying. There are getting to be so many different kinds of programs and pieces of equipment that the technology specialists don't know how to use every program. They can't keep up.
Technology can be both a blessing and a curse. If one has good basic blindness skills and then adds technology as the frosting on the cake, it can be a good thing, but if one uses technology as a substitute for good blindness skills, it will definitely be a curse. Even though I always carry my Braille 'n Speak in my purse, I also carry a couple of slates and styluses. If I need to write something down that I want to study and refer to, I use my slate and stylus, but for some note taking-- especially things I want to save--the Braille 'n Speak is great.
The most important piece of advice I would give to someone just beginning to learn to use technological aids after obtaining good blindness skills would be to find several people who can help you when you have problems. Take notes so you don't have to keep calling them back to ask the same question. Find several people so you don't have to call the same person all the time. Then, when you've become reasonably competent using your equipment, try to help others who are just starting out. I wouldn't go back to the days without technology because I'm definitely more independent on my job, but it's not a panacea. I would never trade it in for my good blindness skills.
by Loraine Stayer
From the Editor: The following article is a sad reminder of how far we still have to go in securing the right of blind people to obtain the rehabilitation and education they need to take their rightful places as fully productive citizens of the United States of America. The federal government allocates billions every year for rehabilitation, and state governments add billions more to the effort. State rehabilitation agencies are designated to spend the money and arrange for, supervise, or actually carry out the work involved. Hundreds of millions of this funding is earmarked for rehabilitating blind people. Yet all too often the would-be recipients of all this largess, training, and skill development find only frustration, discouragement, and disappointment. We can hope that with the clients' right of choice language written into the 1992 amendments to the Rehabilitation Act we will see some improvement in this sorry scene, but don't hold your breath. Inertia is a hard force to counteract, and all too frequently the impulse to do things the way we have always done them will slow the rate of change to a snail's crawl.
The job of the organized blind movement in all this is clear. We must be informed about what the law provides, ready to insist that clients receive the services to which they are entitled, energetic in keeping the state agency on its toes, and creative in finding alternative ways of getting the job done when the agency refuses. The details may change from state to state, but the problems we must solve are depressingly familiar.
Loraine Stayer is the volunteer coordinator for the Job Opportunities for the Blind (JOB) Program in New York. JOB is a job referral and education program jointly sponsored by the National Federation of the Blind and the U.S. Department of Labor. The following is what Loraine has to say about helping blind people despite the discouragement provided by New York's state agency serving the blind, the Commission for the Blind:
As the local Field Representative for the Job Opportunities for the Blind Program, I often encounter clients of the New York State Commission for the Blind and Visually Handicapped. Sometimes I work as a liaison between client and counselor. Sometimes I function strictly as an advisor to the client. Often, when asked, I suggest that the client would get further with the job search without the Commission. This is not always the case, of course. The question is why it should ever be the case.
One client's experience will illustrate the problem even if it does not provide a satisfactory explanation. This gentleman, whom I will call Sam, joined our chapter two years after I had met him at a job fair (not a JOB-sponsored event). I recall thinking when I met him that he didn't carry a cane and ought to.
At the time he asked my advice, Sam was attending college. He wanted the Commission to fund his college education, since he had been paying for it himself. He had already earned an associate degree. Previously, when he attempted to open his case, the Commission determined he had a learning disability and sent him to the Association for Children with Learning Disabilities. Unfortunately, this was a misjudgment on the part of the Commission. Sam was aware he was smarter than the low-functioning children (none of whom was a child) at the Association. He acted out, as they say, when he was told by a counselor that she wished he'd been on a plane that had recently crashed in Scotland.
Sam was sent home in disgrace and continued his education on his own. This time he tried again while actively enrolled in college classes. Instead of taking into account what he was doing, the Commission decided to send him to the Jewish Guild for the Blind (JGB) for evaluation. I advised him against it. He didn't listen, dropped out of classes, and went for evaluation. Jewish Guild for the Blind staffers immediately set him to work putting nuts on bolts. He objected strenuously, saying he had no vocational goals congruent with putting nuts on bolts. No one listened. He dropped out of the evaluation and requested that his case be closed again. With his permission and in his presence I had occasion to review his Commission records. The Commission staff had studied every one of his negatives, which included a weakness in math and that problematic learning disability. Sam could not spell. The Commission had concluded that he was not college material.
At that point we had a serious discussion. Sam told me he wished to be a travel agent, and indeed he had a high verbal ability. I pointed out that he didn't need the Commission for that. Subsequently he went to work in the field of telephone solicitation. Because of the Commission's interference, he dropped out of college.
In Sam's case the client could go farther without the Commission than he could with it. Why? Because he had positive qualities the Commission simply could not or would not see. He lacked the foundation to do college level math, but there was no reason he could not have taken a remedial course. When a man wants to be a travel agent, he ought to look for work in that field. He ought not to be told he should work in a factory. In my opinion the Commission was out of line.
Why? The underlying problem can be found in the make-up of the Commission itself. I can speak most knowledgeably about the Long Island office, since I know a good smattering of the counselors. I won't say they are all poor, since that could not possibly be true. (Could it?) But some of the shortcomings seem common to many. Clients complain that the counselors lie to them. Not only do they lie, according to the clients, but they do so constantly, shaping the facts to fit their own ends. Faced with the truth in writing, counselors often back down. But they simply aren't respectful of the clients. On the contrary.
Counselors are in a unique position of power over their clients. If the clients seek outside help (such as turning to the NFB), threats are not uncommon. One client was told by two workers, "If you remain a member of the NFB, you will receive no services from us." When a letter of protest was sent to them, with copies to the Director of the Commission, they backed down immediately and denied everything in a formal letter that promised continued service to the client. I later learned unofficially that the director had instructed the counselors to write their letter.
Racism is rampant. One black client was told he could not be given a computer with which to do his work because, "How do we know you won't steal it?" Who said this? The senior of the two counselors who tried to deny service to NFB members.
One vindictive counselor can do a lot of damage to the self- esteem of a blind person. Self-esteem is fragile even among the sighted community. But even more serious, a counselor with low self-esteem can do much damage to the self-esteem of his clients. One of the blind counselors in the local office does not have much in the way of this commodity. His mobility is poor. He does not believe enough in himself to extend it to his clients.
A client of the Commission wishes to learn Braille. He is told he has too much vision--he can read one letter at a time. How can he learn Braille without help from the Commission? Well one way is to have another blind person teach him. Another is to obtain Beginning Braille for Adults, on tape and in Braille, from the Materials Center of the NFB and to teach himself.
Mobility lessons are hard to come by on Long Island. Clients are put on a waiting list. At the same time vendors are told that there are no clients available. When a client requests a specific vendor, she is told a referral will be made, but it never is. The client turns for help to her mother and works up an informal mobility lesson, just enough to get around. A better approach would be to come to an NFB chapter meeting and ask a Federationist with good mobility to share his knowledge. Mobility lessons are often shared by our chapter members. As long as the counselors in the Commission for the Blind have no idea that blind people can indeed make successes of their lives, they cannot be assets to the blind.
So what's the alternative? Blind people will continue to be born in New York or to move here, and life must be lived. When the Commission for the Blind fails to help, blind people turn to other blind people for assistance, or they are referred to the National Federation of the Blind.
Why is it that the phrase "the blind leading the blind" is considered pejorative? During the twenty-one years of my membership in the Federation I've seen many lives changed for the better when blind persons lead the way for their blind brothers and sisters. One blind man searches for three years to get a job in a supermarket. Very shortly supermarkets are hiring blind or otherwise-handicapped people for similar jobs. The first man might not consider himself a pioneer, but he is.
Self-esteem for a blind person most often begins to grow when he or she surrounds him or herself with competent blind persons. The National Federation of the Blind provides a positive philosophy of blindness, and its members believe and live this philosophy.
When the sighted will not lead the blind in positive directions, only the blind are left to do it. But because of the National Federation of the Blind, leadership by the blind is becoming more and more the first resort, not the last.
by Peggy Chong
From the Editor: With the growth of the disability-rights movement in general and, more particularly, the increasing effectiveness of the public education campaign of the National Federation of the Blind, it is easy to forget that there are still people who demonstrate deep resentment and profound fear when faced with the necessity of close contact with disabled people. Such unpleasant interludes, however, continue to be inevitable, but they should not discourage us, for they are much less frequent than they used to be. Moreover, today we sometimes even find that other people are prepared to stand with us against this kind of injustice and discrimination.
The recent experience of BLIND, Inc., our adult rehabilitation program in Minneapolis, provides a case in point. As the program has grown and expanded, BLIND, Inc., found that it badly needed additional space and a more flexible facility. Some months ago NFB First Vice President and BLIND, Inc., Executive Director Joyce Scanlan and the Center's board began searching seriously for another building. Eventually they discovered that the mansion originally owned by the famous Pillsbury family was on the market. It would need a good bit of work, but the building was sound, and the architecture was remarkable. Everyone agreed that it would make an ideal teaching facility. The property was purchased and the renovations begun. By the end of last March, enough work had been done to allow the staff and students to move in. But the problems were not at an end. Their next-door neighbor decided that the presence of a group of blind people in the neighborhood would lower property value and cause all kinds of difficulties. He sued the city in an effort to stop the sale and then suggested that, if BLIND, Inc., would pay him $100,000 to compensate him for his losses, he would drop his suit.
BLIND, Inc., was having none of it. We all know how much the property values in the area around the National Center for the Blind have increased since we moved in and began reclaiming the property. BLIND, Inc., expected to improve its neighborhood in the same way. No one could be allowed to argue that property values would fall because of the presence of blind people. So the suit continues, and BLIND, Inc., continues to make friends and improve its neighborhood. Peggy Chong, President of both the Metro Chapter of the NFB of Minnesota and the BLIND, Inc., Board of Directors, recently sent us the following statement and newspaper editorial. Together they tell the story. Here they are:
Blindness: Learning in New Dimensions (BLIND, Inc.) has a new home. It is the Charles S. Pillsbury Mansion at 100 East 22nd Street in Minneapolis. On December 29, BLIND, Inc., and the NFB of Minnesota purchased the building and opened a new chapter in the lives of blind Minnesotans.
Much restoration and remodeling are going on to accentuate the magnificence of the mansion and to show the neighborhood how respectable it is to be blind.
On Friday, October 14, we will hold our grand opening. Many of our new neighbors have already come to learn about our organization and our philosophy of blindness. One neighborhood group is beginning to hold meetings here, giving us more opportunity to show just what good training and a positive attitude can do in the lives of blind people. Through such contacts we also get to meet more of our neighbors.
We have one neighbor, however, who does not like the idea of blind people in his neighborhood. But times are truly changing as evidenced by the following editorial from the July, 1994, edition of the Surveyor, the local newspaper in our area. It is clear that the rest of our new neighbors see him for what he is and ignore his warnings about the threat of blind people. Here is the editorial:
Case of BLIND, Inc., Illustrates Growing Intolerance in Inner City
The Pillsbury Mansion at 100 East 22nd Street was purchased a few months ago by BLIND, Inc., to be used as a school for the blind. The owner of number 116 next door, Ken Betzler, is suing the city, a suit which BLIND, Inc., is forced to defend, over a zoning permit granted to the school involving off-street parking between the two properties. The permit was required for the school to operate, and without it the purchase would have been halted.
In addition to the arcane details of the parking dispute-- BLIND, Inc.'s position is firmly supported by Planning Department staff--Betzler opposed the original purchase by arguing that the Pillsbury Mansion was a candidate for home ownership. He based his opposition on the avowed goal of the Whittier Alliance to promote home ownership in the neighborhood, and not on any realistic market prospects.
While Betzler does indeed own the home in which he lives, it is less widely known that he also rents rooms in his mansion, making him a landlord and giving his claims to promoting home ownership a disingenuous tone.
If you had called Betzler's home phone number at 6:00 p.m. on June 24, you would have heard the following message: "If you're calling about the room, please leave your name, telephone number, and the time you called; and I'll get back to you as soon as I can." Twenty-four hours later the message said the room in question had been rented.
Betzler has also argued that the presence of a school for the blind, to which his lawyer referred in a letter to the Planning Commission as a "social service agency," will lower his property values. In a proposed settlement letter to BLIND, Inc., dated May 17, Betzler's attorney, Bruce Rasmussen, asked for $100,000 in compensation for this perceived decline in value. BLIND, Inc., has rejected the proposal out of hand.
The original zoning decision was approved by the city council on a twelve-to-one vote; yet both Betzler and Rasmussen believe they have a strong case.
Rasmussen's role is interesting, because he too owns a mansion only a block away, which he renovated for his business in 1979. Rasmussen is chief counsel for the Whittier Alliance, which voted its approval of the BLIND, Inc., project. What would Rasmussen do were the Alliance to decide to submit arguments to the court on behalf of BLIND, Inc.? Is it possible that Rasmussen's role as counsel to the plaintiff has had the effect of influencing the Alliance board not to take further steps on behalf of BLIND, Inc.? So far, no one seems to be bothered by his prima facie conflict of interest.
Apparently, the message here is that lawyers make better neighbors than schools for the blind. That must be stressed: this is not a home for the blind or a "social service agency," as if either might somehow diminish the acceptability of the proposed use for the building. It is a school. If Betzler's property loses value because of diminished access to off-street parking for his tenants, it will be value it didn't have in the first place. If he is claiming that the mere presence of blind people during the day is the cause of a decline in property value, then his attitude is discriminatory and smacks of the redlining of an earlier, some thought forgotten, era.
The case presents an object lesson in an ongoing trend in the inner city toward intolerance. The unreasonable attacks on a proposed youth housing project in Loring Park and, earlier, successful resistance to the purchase of property in Stevens Square by a substance abuse organization are but two examples.
The resistance to the renovation of 1801 LaSalle for low- income renters in Stevens Square bears remembering. Even the most fanatically opposed local landlords now admit that the building is well run and an asset to the neighborhood. Yet some interests continue a veiled attack on the property by proposing development schemes of the adjoining commercial property that conveniently envision the demolition of 1801 LaSalle.
The real enemy, to paraphrase Franklin Roosevelt, is fear--fear of the unknown, fear of people different from us, fear of people we suspect hold different values.
All people, regardless of physical abilities, economic status, or skin color, want the same things: to feel secure, to have an equal opportunity to succeed, to be productive, to pursue happiness. To obstruct that pursuit in ways either overt or insidious violates the Constitution and affronts the dignity of those in whose way we stand.
by Lesli Hicks
From the Editor: The following article first appeared in the June 9, 1994, edition of the San Antonio Express-News. It demonstrates that little by little the word about the effectiveness of blind workers is spreading. Here it is:
Cellular One, Phone Power, U.S. Long Distance Corporation, and USAA are among a handful of Alamo City companies employing blind women and men.
But those employers aren't likely to remain an anomaly for long, observers said. That's because jobs once thought to require extraordinary effort by visually disabled people no longer bear that stigma.
"I would say that the trend (of employing the blind) is going in the positive direction," said James Gashel, Director of Governmental Affairs for the National Federation of the Blind in Baltimore, a nonprofit organization seeking to integrate the blind in corporate America.
In recent years technology such as computerized Braille, enhanced print, and synthetic speech has helped the blind land jobs. Well-paying ones, too.
The Texas Commission for the Blind reported that in 1993 blind people in the state were earning as much as $880 a week as nursing supervisors, $750 a week as instructor supervisors and $650 a week as teachers, among other posts.
To be sure, the blind could have performed most of those tasks long before. Technology simply has nudged employers increasingly interested in diversity to recognize the talent pool of blind professionals, those in the know said.
"There are a lot of things you can do without sight," said Ferdincio Cruz, nineteen, an operator at U.S. Long Distance who travels to and from his thirty-hour a week job by special city transit.
Parris "Butch" Holmes, chairman and chief executive officer of U.S. Long Distance, said the company first began hiring blind operators about a year ago as part of being a good corporate citizen.
"But...the payback has been unbelievable," Holmes said, citing an employee-rating system that ranks his four blind operators--a fifth is on the way--as "outstanding."
One reason U.S. Long Distance's blind operators have performed so well, Holmes believes, is their work ethic.
"They do not think that a job is handed to them. They feel like they earned the job," he said.
Although many U.S. employers such as Holmes are getting that message, employment of the blind is far from robust, data show.
There are an estimated 700,000 blind Americans, roughly more than half of whom are at least sixty-five, and about 50,000 of whom are age eighteen or under. More than seventy percent of blind people who are employable are either unemployed or substantially underemployed.
As a result most must live on some kind of assistance such as Social Security benefits.
Change is gradual, said Gashel of the National Federation, whose mantra is that the average blind person can work in any place of business and maintain a level of performance comparable to his or her sighted counterparts.
Nancy Dunn agrees. She's Director of Community Relations for the San Antonio Lighthouse, a sixty-year-old non-profit organization with two divisions: one that trains the blind for the work force and one that employs 135 on various contracts, including manufacturing chin straps for military helmets.
"We're trying to get employers to hire blind people because it's an opportunity, not just for the person who is blind, but also for the employer," Dunn said.
Since the 1970's the Lighthouse, which occupies about 56,000 square feet on the South Side at Roosevelt Avenue, has manufactured more than 250 million mechanical pencils without any rejections, she said.
"That's a level of quality any company would be proud of," Dunn said.
Job Opportunities for the Blind, or JOB, which is supported in part by the U.S. Department of Labor, tries to link blind Americans with employers.
Beyond that it provides free consultation to employers interested in learning more about opening their work place to the blind.
JOB Director Lorraine Rovig said that beyond securing the necessary equipment to assist them, blind workers don't want special treatment. In fact, they want to be held to management's standards.
"What they ask for is `reasonable accommodation,'" Rovig said.
USAA has put Tony Wilson in charge of making the diversified financial services firm reasonably accommodating to employees with special needs.
His title, appropriately enough, is Job Accommodations Specialist.
Not only must he consider employees' needs, he removes barriers for job applicants. For example, special telephonic equipment for the deaf is available to hearing-impaired applicants.
Recently, Wilson also has been exploring the latest in software for blind computer-users.
With the dawn of the Americans With Disabilities Act, even companies much smaller than USAA are considering what's available to disabled workers, Wilson said. And they're discovering that it's doable, he said.
"At smaller companies personnel directors are becoming the person tasked to comply with ADA," Wilson said. One beneficiary of Wilson's efforts is Patrick Sturdivant, a programmer analyst at USAA since 1987.
Sturdivant, twenty-eight, works thirty-eight hours a week, and his work is so valued that his supervisor sometimes forgets he's consulting with a man who cannot see.
On Tuesday the two men were weighing the pros and cons of two separate programs. Sturdivant's supervisor got so involved in the discussion that he started referring to one of the programs as "this one."
"I had to ask, `Which one? I can't see,'" Sturdivant said, calling that an example of how his lack of sight is a "non- issue."
"I guess there are people who might not know that great adaptive equipment exists" to make performing the work seem seamless, he said.
Blind computer programmers worked as long as twenty-five years ago, the graduate of St. Mary's University said, but "their job was a lot harder."
All data available to computers or on paper is accessible to Sturdivant and the four other blind employees of USAA, he said, adding: "Unfortunately, there are some people who don't know that."
Felix Frydberg, a sales-team leader at Cellular One, knows it.
The company hired two blind inside sales representatives nearly two years ago. In that first year the sales team was named "Sales Team of the Year," he said.
"We don't target blind people to hire, but if we were to find more people who are qualified for the job and they happen to be blind, that's wonderful," Frydberg said.
by Kenneth Jernigan
This has been a year of achievement for members of the National Federation of the Blind. As a prime example, witness the appointment of Fred Schroeder to the position of federal Commissioner of Rehabilitation.
Also witness the case of Don Capps, President of the National Federation of the Blind of South Carolina and member of the NFB Board of Directors. When I was at the NFB of South Carolina convention in mid-August, the growth and progress were unmistakable. Top state officials were present for the banquet and other activities, and the reason was not hard to find. Over 350 people attended the banquet, and approximately 400 were present for the convention.
As longtime Monitor readers know, Don Capps serves as vice chairman of the board of the South Carolina School for the Deaf and the Blind. Recently he was honored for his work in education, but I suspect there was more to it than that. He was also undoubtedly being recognized for his outstanding personal accomplishments and for his leadership of one of the most powerful citizen organizations in the state, the National Federation of the Blind of South Carolina. Here is the letter announcing the honor:
August 10, 1994
Dear Mr. Capps:
You have given generously to public education in South Carolina, and we want to recognize you for this. The South Carolina Chapter of the National School Public Relations Association has chosen you as its 1994 Outstanding Leader in Education. Katie Rice of the South Carolina School for the Deaf and Blind nominated you for this award.
We give two Outstanding Leader in Education awards annually, one at the state level and one at the local level. You will receive our state award, and Mr. Dan Hargett, of MEMC Electronics in Spartanburg, will receive our local award.
In your honor we have scheduled a 12:30 p.m. awards luncheon on Friday, September 23rd, at the Capital City Club. We hope you will be able to attend. The Club is on the 25th floor of the AT&T Building on Main Street in Columbia. We will present you with the award at this time. As you accept your award, you may want to say a few words about why you feel it's important to be involved in public education and how your contributions have made a difference in the education of students in South Carolina.
Mr. Capps, you should be proud of yourself for giving so much to the children of this state. Congratulations on winning our state award.
Gregory K. Plagens
Outstanding Leader in Education Committee
National School Public Relations Association
by Kenneth Jernigan
Mrs. Jernigan and I went to Spartanburg for the August 12 to 14 fiftieth anniversary convention of the National Federation of the Blind of South Carolina, and it was all that a fiftieth anniversary could hope to be. Some 400 people were in attendance, and the publicity was outstanding. South Carolina is probably our biggest affiliate with 46 local chapters, three of them being statewide divisions.
But it is not just the members. It is the activity, the programs, the public support, and the spirit that make the organization what it is. And, of course, it is also Don and Betty Capps.
To celebrate the occasion, a fiftieth anniversary documentary cassette was played and distributed. It contains comments from three governors, Senators Hollings and Thurmond, Dr. tenBroek, and other leaders. A fifty-year commemorative book was also released and discussed. Entitled Under the Apple Tree, it gives the highlights and history of the NFB of South Carolina from 1944 to 1994. Fiftieth anniversary mugs, featuring the NFB logo in the center of the state of South Carolina, were also given to convention attendees and placed on sale.
As part of the ceremonies, Dr. Fred Crawford (first director of the South Carolina Commission for the Blind) was present, along with his sister Frances, to talk about the early days of the organization and the situation as it was in South Carolina in the forties. The same theme was continued in the Presidential Report given by Don Capps. In line with the theme of continuity, a presentation was made at the banquet which seemed particularly fitting. It was an enlarged picture of Dr. Sam Lawton's hands reading the Braille Bible. Dr. Lawton, of course, was the founder of the South Carolina organization in 1944 under that famous apple tree. His daughter, his granddaughter, and his blind great grandson (Nicolas Stockton) were present for the occasion.
Nick Theodore, current Lieutenant Governor and leading candidate for governor, was the luncheon speaker; and Earle E. Morris, Jr., Comptroller General for South Carolina, spoke during the banquet. Carole Wells, member of the South Carolina legislature, also spoke at the banquet. Some $6,900 in scholarships were given at the banquet.
There was an outstanding panel of blind persons who are succeeding in employment. They were: Carroll Anderson, radio announcer in his home town of Camden; Lewis Fowler, computer programmer for Clemson University; and Richard Thompson, claims representative for Blue Cross/Blue Shield.
Approximately $2,400 in SUN shares (some of it having been pledged at the Detroit Convention) was raised and sent back to the National Office. Charters were presented to three new local chapters: Dillon County, Greater Batesburg-Leesville, and Abbeville County. A number of awards were given, including a new Educator of the Year Award.
Officers for the next two years are: Donald C. Capps, President; Frank Coppel, First Vice President; Lenora Robertson, Second Vice President; Mike Sutton, Treasurer; and Dorothy Barksdale, Secretary. The four new board members are; Carey Burris, Loukeyar Alston, Sheila Compton, and Ronnie Logan.
Special fiftieth anniversary greetings were received from President Clinton, Senator Hollings, and Senator Thurmond. Governor Carroll Campbell proclaimed August 13 National Federation of the Blind Day in South Carolina.
It was an inspiring convention, and a pleasant convention. Mrs. Jernigan and I headed home with happy memories and a car full of peaches.
by Susan Ford
From the Editor: Susan Ford is one of the leaders of the National Federation of the Blind of Missouri. She has also been an active member of the National Federation of the Blind's Committee on the Senior Blind. She recently sent the following article on the Committee's work to the Braille Monitor. Here it is:
Blindness is predominately a disability of older Americans. In an effort to respond to this fact and meet the needs of this group, the Committee on the Senior Blind has been meeting at convention for the past several years. Currently Cathy Randall of Illinois is its chairperson. Each year important issues are discussed with many seniors and others who are especially interested in these matters.
This year we had a rousing discussion about a project to teach Braille to seniors, which is part of the Colorado Center for Citizens with Disabilities in Boulder, Colorado, and which was presented by Tina Blatter and two of her students. There was also a discussion about macular degeneration and other degenerative conditions of the eye. The discussion was then opened to other issues of concern.
A White House Conference on Aging is scheduled to be held in 1995. The opinion was expressed that we need to do our utmost to take part in mini-conferences at the local and state level so that blindness and vision loss will not be ignored. If we do not make our voice heard at this time, others who think less positively than we do will be the only voices heard and will, therefore, make future governmental policy for blindness and aging.
A number of people asked where this committee plans to go. We have never elected officers or planned activities between conventions. As people live longer and healthier lives, it is apparent that in the next thirty years the number of senior blind citizens will greatly increase. Does this committee want to take a higher profile in the National Federation of the Blind? Should it, for instance, make application to become a division? The younger people present expressed a wish to support the group but hoped that seniors would take leadership positions if we choose to take a higher profile. All present agreed that our primary concern is to improve services to senior citizens who happen to be blind, and currently the agencies which serve seniors are not satisfying this need.
We seek the views of Monitor readers who want to become an active part of this committee. Is it time to become a formal division? Would it be better to remain a committee? Should we devise projects and activities between conventions?
The group generally agreed that there are needs pertaining to the senior blind, and there is a good deal of interest in addressing them. If you want to assist in the development of this group, please contact Cathy Randall at 11 Pitner Place, Jacksonville, Illinois 62650; or Harry Bennett at 2116 Henry Avenue, Fayetteville, North Carolina 28306.
From the Editor: This month's recipes come from Montana. The affiliate has been collecting recipes for a large-print cookbook, and most of the following have been chosen from this collection.
The pasty (rhymes with nasty) originated on the west coast of England as a tin miner's portable lunch--a small envelope of pastry, pointed at both ends and designed to be carried in the pocket. Old-timers will tell you the pasty arrived in Butte along with the first Cornish housewives, who followed their husbands into the camp direct from Cornwall. Long favored in the miner's lunch bucket, the pastry-wrapped meal of meat and vegetables was an ideal way for the Cousin Jennie to provide a hearty meal for the hard-working Cousin Jack. As the miner unwrapped his lunch, he would fondly refer to the pasty as a "letter from 'ome." Its popularity spread quickly throughout the camp, and today the pasty is as much a part of Butte as the Berkeley Pit.
While Butte is inclined to claim the pasty as its very own for the Irish, Cornish, Welsh, and Italian miners, one Cornish authority wishes to point out, "Any place in the world where two or more Cornishmen are gathered, there is the pasty--with one important variation: the American form of pasty calls for diced meat; at home in Cornwall, never! It is always sliced."
There is an old Cornish saying that goes, "The Devil is afraid to come to Cornwall for fear of being baked into a pasty." There is also another old Cornish saying, "Only a true Cornish woman can make a proper pasty." Perhaps the following recipes will serve as encouragement for those who have never mastered this culinary feat. President Maurer reports that this delicious dish was served with brown gravy at the 1993 Montana affiliate's convention banquet. At his request then-affiliate-President John DeHaas collected this lore and offered these recipes. Here are two of them. The first comes from Betty Aultman:
skirt of flank steak or loin tip
salt and pepper
3 cups flour
1 cup lard
cold water or milk
1 teaspoon salt (added to flour)
Method: Cut lard into flour using a pastry blender until it resembles coarse meal. Add only enough water to make pastry stick together. Roll out rounds to size desired for each pasty. Begin by layering sliced potatoes on half the round, then sliced onion, salt and pepper to taste; next add a layer of meat (sliced or diced) and more salt and pepper; add another layer of potatoes, then onions, and more salt and pepper. Top the filling with a pat of butter. Dampen edges of dough and pull it over and up, gathering and crimping across the top to seal. With sharp knife cut a vent in the top. Brush pasties with a mixture of 1 egg yolk and 1 tablespoon water before baking. This seals in the juice and gives the pasties a golden brown color. Pasties made with lard might otherwise be white after baking. Bake at 400 degrees for 15 minutes; then at 325 for 1 hour.
Melt 1 teaspoon butter with 1 tablespoon water and pour twice into vent during last 15 minutes of baking.
HOT CORNISH PASTIES
from Gamers Confectionery
Founded in 1905, this restaurant in Butte is one of the oldest business concerns in the young state of Montana. This version of the Cornish Pasty has been a favorite with Gamers' customers for a half century.
1 pound sirloin tip
3 raw potatoes, cut fine
3 green onions, cut fine
salt and pepper to taste
4 cups flour
1 cup lard
1 ounce butter
2 teaspoons salt
pinch of baking powder
Method: Cut steak in small cubes, add vegetables and seasonings. Mix well, and set aside. Cut shortenings into flour and add enough cold water to make a stiff dough. Roll out about þ-inch thick and cut 6 circles about 6 inches in diameter. A saucer is a good guide. Into the center of each circle put a mound of filling ingredients. Moisten around the edge of the pastry and press halves together at the edges with a fork. Brush each with a mixture of 1 egg and 1 tablespoon cream, beaten together. Make a vent in each to let steam escape. Bake at 425 degrees for 1 hour. Serves 6.
by Helen Cowles
Helen Cowles of Bozeman has been a member of the Montana affiliate since 1980. In 1990 she received the Keith Denton Award given by the affiliate to the member who has contributed most during the previous year. She also received the Bozeman KBOZ Volunteer of the Day Award in 1990.
1 ready-made graham cracker crumb pie crust
1 8-ounce carton of Cool Whip
2 8-ounce containers vanilla yogurt
2 cups strawberries
Method: Fold together sliced strawberries with yogurt and Cool Whip. Fill pie crust and freeze several hours. Variations: use lime, lemon, or orange yogurt for the pie instead of vanilla yogurt and fold in fresh fruit.
MONTANA SWEET AND SOUR
by Nancy Wheat
Nancy Wheat of Dillon, Montana, has been a Federation member since 1991, joining when she attended the Summer Orientation Program. In the past year she has helped organize the newly-formed Beaverhead Chapter. Nancy has been married fifty-nine years and lives on a ranch in Montana for six months of the year and in Hawaii for the remainder of the time.
1 large can pork and beans
1 can Seaside lima (yellow) beans
1 can green lima beans, drained
1 can red kidney beans
1 can cut green beans, drained
2 pounds sliced bacon
1 1/2 large onions, chopped
1/2 cup catsup
1 cup brown sugar
1/2 cup vinegar
garlic powder or buds
pepper to taste
Method: Cut bacon into small pieces and fry together with the onions. Drain well. Put into large casserole with beans. In a small bowl mix catsup, brown sugar, and vinegar. Season with garlic powder or garlic buds. Pour over beans and bacon; stir thoroughly but gently. Sprinkle with pepper to taste and bake at 300 degrees for 4 to 5 hours. This may be prepared the day before and cooked on the day it is to be used. It also does well in a crock pot on low for 8 hours.
BRAISED SWISS STEAK
by Betty Lou Berg
Betty Lou Berg of Butte is currently Secretary of the Montana affiliate. In the 1994-95 school year Betty Lou will be a Braille tutor for a Butte public school student. For recreation she enjoys knitting and pursuing her hobby of geneology.
1 1/2 pounds round steak
3 tablespoons flour
2 tablespoons vegetable oil
1/2 cup grated carrots
1/2 cup chopped onion
2 tablespoons chopped parsley
3 whole cloves
2 bay leaves
1 teaspoon salt
1/2 teaspoon liquid gravy
1/4 teaspoon dried thyme
1/8 teaspoon pepper
1 cup water
Method: Wipe steak with damp paper towels. Coat with 2 tablespoons flour. In hot oil in large skillet brown steak well on both sides (15 to 20 minutes). Add onion, carrot, parsley, cloves, bay leaves, salt, gravy seasoning, thyme, pepper, and water. Bring to a boil, then reduce heat and simmer, covered, for 2 to 2« hours. Add more water during cooking time if needed. Remove steak to serving dish. Combine remaining 1 tablespoon flour with ¬ cup water. Stir into liquid in the skillet and bring to a boil, then reduce heat and simmer 3 minutes. Remove cloves and bay leaves, and pour over steak to serve.
by Marguerite Boehler
Marguerite "Sis" Boehler was one of the organizers of the Missoula Chapter and has been President for four years. This recipe comes to us as a Russian soup that migrated from Germany to this country with her husband's family.
Method: Make a spice bag using one onion and a couple of good-sized pinches of pickling spices tied up in a piece of cheese cloth. Put in soup kettle with 2 or 3 knuckle bones and 2 to 3 pounds of brisket of beef or boiling beef, a couple of bay leaves, salt and pepper. Cover with water and cook several hours, until the meat is tender. Shred a small head of cabbage. Dice or cut into shoestrings about 10 carrots and add, together with 2 cans of shoestring beets--juice and all. Sieve 1 can tomatoes into this. After this has cooked until vegetables are tender, add 4 or 5 peeled and cubed potatoes. When the potatoes are done, remove soup from heat and allow to cool. Stir about 1/2 cup sour cream (or 1/2 cup whipping cream soured with 1 tablespoon vinegar) into the soup. Serve with hard rolls.
by Kay Kjellstrom
Kay Kjellstrom has been a member of the Montana affiliate since 1990. She is a busy wife and mother who has been instrumental in establishing two 4-H groups for blind children in Great Falls: one for students at the Montana School for the Deaf and Blind and the other for blind youngsters attending the public schools. She actively participates in the Great Falls Chapter. Kay is a newly-elected member of the Montana affiliate's Board of Directors. This year Kay received the Montana Golden Rule Award given by J.C. Penney in recognition of her many contributions.
1 cup flour
1/4 teaspoon salt
1/4 cup water
1/2 cup dry cottage cheese
1 egg yolk
1 teaspoon butter
1/2 cup cooked mashed potatoes
Method: Combine first flour, salt, and egg in bowl. Stir in 1/4 cup water. Knead on floured surface. Roll out thin and cut into 2-inch squares. Mix cottage cheese, egg yolks, butter, and mashed potatoes. Spoon 1 teaspoon onto each square, fold into triangle, and pinch edges to seal. Drop into boiling salted water in large saucepan. Cook until dumplings rise to surface, then cook 5 minutes longer. Drain, rinse with cold water, and drain again. Serve with lightly browned butter. May saute in butter in skillet and serve with sour cream. Other fillings sometimes used include rhubarb, prunes, or other dried fruit. Yield: 50 dumplings.
JOHN'S LOW-CAL MILKSHAKE
by John DeHaas
Immediate past President of the affiliate, John DeHaas of Bozeman has been an MAB member for eleven years. He served as a Director for eight years and was President for two years. During much of that time he was also President of the Bozeman Chapter. This is a favorite summer beverage of John's.
Method: In a blender put 1 cup skim milk and a banana which has been broken into 3 or 4 pieces. Add 1/2 capful (about 1/4 teaspoon) vanilla extract and blend until smooth. If you want a thick shake, add a few crushed ice cubes before blending. Variations: use strawberries, raspberries, or other fruit; use almond, lemon, rum, brandy, or other extract to suit your own preferences.
Two New NFB books Available in NLS Collection:
Two more NFB books are now in the Library of Congress collection:
The Freedom Bell, edited by Kenneth Jernigan, one cassette. Library of Congress annotation:
In a collection of essays individuals discuss aspects of their blindness, and many emphasize the impact that the National Federation of the Blind has had on their lives. The title refers to the bell that is rung at the Louisiana Center for the Blind to celebrate a member's success or an event that may have meaning for all individuals who are blind. One essayist describes her relief at shedding self- imposed limitations and beginning a career.
As the Twig Is Bent, edited by Kenneth Jernigan, one cassette. Library of Congress annotation:
The National Federation of the Blind presents essays from individuals who discuss aspects of growing up blind. Overcoming others' misconceptions about blindness is the central theme among experiences such as being overprotected as children, deciding whether or not to use a cane, and seeking employment. Contributors range from a seven-year-old boy to the creator of the Braille math code. Many stress the importance of the National Federation of the Blind in their lives.
We have been asked to carry the following announcement:
Latest version of Vocal-Eyes for sale, asking $300 or best offer.
Bondwell 386SX, 16 MHz notebook computer, 40 MB hard drive (DOS 6.2, which doubles the hard drive to 80 MB), expandable case and two charger/electric outlets, one set of rechargeable nicad batteries included. Asking $800 or best offer. Perfect for use with an external voice synthesizer. If interested, call Katherine at (602) 299-6567 or (602) 794-2219.
WBU International Essay Contest:
To commemorate the tenth anniversary of the founding of the World Blind Union in 1984, blind and visually impaired people are invited to participate in an international essay contest on the subject, "If I Were the WBU President: My Expectations of the Organization's Role as the Twenty-First Century Approaches"
The following rules apply:
1. It is open to all blind and visually impaired people of any age and nationality.
2. The definition of blindness to be applied to participants is the one adopted by the WBU. The visual condition must be certified by an ophthalmologist.
3. The essays must be at least 1,500 words long, up to a maximum of 10,000 words, in English, French, or Spanish, in Braille or in inkprint. They must be signed with a pen name.
4. The essays must have an attached sealed envelope with the name and address of the author and the certificate of blindness. The pen name must be written on it.
5. The essays must be received not later than December 31, 1995.
6. The essays must be sent to World Blind Union, World Blind Union Tenth Anniversary Contest, La Coruna, 18, 28020 Madrid, SPAIN.
7. There will be three awards: first prize, $1,500 plus publication of the essay; second prize, $750 plus publication of the essay; and third prize, publication of the essay.
8. The officers will publicize the composition of the jury in the course of 1994. The decisions they adopt will be made public during the Fourth General Assembly, from September 2 to 6, 1996, in Hong Kong.
Note: Article II, Section 3, paragraph (a) of the World Blind Union Constitution says "`Blind': throughout this Constitution the term `blind' means blind and visually impaired. National members shall be entitled by this Constitution to use their own national definition of blindness."
Perkins Brailler Wanted:
We have been asked to carry the following announcement:
Wanted to purchase: used Perkins Braillewriter in good working order. Contact Cheryl Johnson at (701) 852-8595 with details concerning price information.
Wayne Davis, President of the National Federation of the Blind of Florida, reports that Marilyn Baldwin, President of the Orlando Chapter, was appointed to the Florida Transportation Disadvantaged Commission. He reports that it took over two years for the affiliate to get this appointment. Ms. Baldwin also chairs the Transportation Committee of the NFB of Florida. Congratulations to Ms. Baldwin.
We have been asked to carry the following announcement:
Job Access With Speech (JAWS) software package current release for sale. To make an offer write or call Agnes G. Cook, HC01, Box 9, Bluffton, South Carolina 29910; (803) 757-2598.
Lighthouse Buys AFB's Consumer Products Business:
We recently received a press release, which says in part:
In a joint statement the American Foundation for the Blind (AFB) and the Lighthouse, Inc., today announced completion of the sale of AFB's consumer products business to the Lighthouse.
The Lighthouse takes over the AFB products catalog immediately and will retain AFB's current 800 toll-free telephone number for orders and customer service needs.
"This transaction represents a significant element of AFB's shift in strategic direction announced a year ago," stated Carl R. Augusto, President and Executive Director of AFB.
The Prairie State Chapter of the National Federation of the Blind of Illinois elected new officers on Saturday, June 4, at its annual picnic. The following were elected: Nancy Jones, President; Kathleen Heisner, Vice President; Ray Shank, Secretary; and Jay O'Brien, Treasurer. Elected to serve on the Board were Joseph Moree, Helen Shank, and Jeanette Hakey.
General Foods Preparation Instructions Available:
We have been asked to carry the following announcement:
Have you ever bought a packaged-food product, taken it home, and then had to find a sighted person to read the directions to you? Now General Foods USA has solved that dilemma by putting package directions for its many food products into one easy-to- use reference booklet in Braille, called Product Packaging Directions. Included are directions for products such as Kool-Aid and Tang beverages, Jell-O brand desserts, Shake'n Bake coatings, Stove Top stuffing mixes and many more.
Everyone who orders this special General Foods USA package direction booklet will receive an assortment of General Foods product coupons--with a value at least equal to the purchase price of the book.
One Braille volume is $10. Send orders to National Braille Press, 88 St. Stephen Street, Boston, Massachusetts 02115; or call (617) 266-6160; or fax (617) 437-0456.
We have been asked to carry the following announcement:
I have a perfectly good scanner for a Kurzweil Reader, model 7315, for which I am asking only $500 or best offer. I also have the computer portion of the reader, but it needs $400 worth of work. I would be happy to include it with the scanner if the buyer were interested. Contact Ted Ward by calling (602) 299-6567.
Attention Mothers of Young Children:
We have been asked to carry the following announcement:
Connie Conley-Jung, a doctoral student at the California School of Professional Psychology, who is herself legally blind, is seeking visually impaired or blind mothers of infants or young children to participate in her dissertation study. If you are interested in becoming involved, please contact her at (510) 523- 1774 in Alameda, California. Collect calls will be accepted.
Large Print Calendars Available:
We have been asked to carry the following announcement:
Announcing a Visually Unique daily appointment calendar, designed specifically for people who would like to have large, easy-to-read dates and times, as well as bold lines and plenty of room to write. The letters (35 point) and numbers (26 point) are easy to read without low vision aids. Bolded lines are spaced þ inches apart to accommodate large handwriting. Show-through is not a problem when using an easy-to-read black pen such as a 20/20 pen. Each weekday is displayed on facing pages, with half- hour segments from 7:00 a.m. to 12:30 p.m. on the left page and 1:00 p.m. to 6:30 p.m. on the right page. Each weekend is displayed on facing pages, with hourly segments from 7:00 a.m. to 6:00 p.m., Saturday on the left page and Sunday on the right page. The calendar is printed on white 8« inches by 11 inches three-hole-drilled sheets of heavyweight (24 pound) laser paper. This 312-page calendar fits in a 2- to 3-inch standard three-ring binder (not included), and measures 11 inches by 17 inches when open. We recommend that you use a locking ring binder to carry all or part of the calendar with you or leave it on your desk in a binder that allows the pages to lie flat. Order by calling or writing for current pricing information Visually Unique, P.O. Box 2841, Dallas, Texas 75221-2841; or call (214) 416-5568.
Brailler Repair Service:
We have been asked to carry the following announcement:
The Braillery offers a complete repair service for Perkins Braillers. We can repair any model Brailler. Rapid and courteous service; Braillers usually repaired and shipped within two weeks; special emergency repairs available if needed.
The Braillery buys Braillewriters--any condition, working or not, any make or any model, any age. Reasonable rates, guaranteed work. Institutional maintenance contracts available. We solicit government agencies, schools, and individuals and accept voucher payment. For more information contact the Braillery, 5 Cumberland Circle, El Paso, Texas 79903; or call (915) 565-0179, Fax (915) 565-0601.
Large Print Books for Sale:
We have been asked to carry the following announcement:
Larger Than Life Books provides popular books to the visually impaired. We sell bestsellers in large print format (minimum 16 point) by mail. All books are reasonably priced. We have a wide selection of both hardcover and paperback books that will appeal to adults. Subjects range from mystery to romance, humor to inspirational. Some titles are The Good Samaritan Strikes Again by Patrick McManus, Mountain Laurel by Jude Deveraux, The Clan of the Cave Bear by Jean Auel, Down the Long Hills by Louis L'Amour, and many more.
We strive to provide quality reading material to our customers. People can easily and conveniently order books through the mail, allowing access to a greater number of titles. For more information contact Larger Than Life Books at P.O. Box 704, Corvallis, Oregon 97339.
We have been asked to carry the following announcement:
I have for sale an Optacon with carrying case. I will also include a battery charger and visual display. The equipment is in excellent condition. I am asking $750 or best offer.
I also have a Cranmer-modified Perkins Brailler for sale. I will include tape and print manuals, as well as an adapter cable. The price is $750 or best offer.
I am interested in speaking with any blind or visually impaired individuals who either work in or are interested in pursuing a career in the metals industry.
Please contact Kerry Stein at P.O. Box 36068, Birmingham, Alabama 35236; or call days (205) 425-0800, or evenings (205) 967-4901.
1995 Seedlings Braille Books for Children Catalogue Available:
We have been asked to carry the following announcement:
Seedlings Braille Books for Children announces its new 1995 catalog, which became available September 1, 1994. This catalog contains over 200 low-cost Braille books for children, ages one to fourteen.
Thirty-two new books have been added this year, including for pre-schoolers print-and-Braille books with sound buttons to push; for beginning readers print-and-Braille easy-readers like Nate the Great and the Sticky Case; for older children award-winning fiction like Maniac Magee by Jerry Spinelli and Matilda by Roald Dahl.
Seedlings is a non-profit corporation dedicated to providing high-quality, low-cost Braille books for children. To receive their free catalog or for more information, call (800) 777-8552, or write to Seedlings, P.O. Box 2395, Livonia, Michigan 48151-0395.
John A. Yark, Corresponding Secretary of the Stamford Chapter of the NFB of Connecticut, reports that on June 4, 1994, the following officers were elected: John Padilla, President; Judy Murphy, Vice President; Irene Yark, Recording Secretary; Patricia Somma, Treasurer; and John Yark, Corresponding Secretary.
Network Volunteers Needed:
Penny Hartin of the Canadian National Institute for the Blind recently sent us the following notice:
The Committee on the Status of Blind Women of the North America/Caribbean Region of the World Blind Union has been working for the past several years to find ways to improve the economic, social, and cultural situation faced by blind women in our region and, in particular, in the less developed Caribbean countries. The group's current initiatives include conducting a survey of blind women in the Caribbean, developing a pamphlet containing profiles of blind women from throughout the region, and organizing leadership seminars for blind women in the Caribbean in 1996.
Another initiative which the Committee has undertaken is the establishment of a network of blind women throughout the region who may have an interest in the work of the Committee and who have some skills or contacts which they would be willing to share with the Committee or with other blind women. Some of the areas of expertise that would be helpful to the Committee include skill training of various kinds, organizational development, public speaking, proposal writing, advocacy, etc. We would also like to identify blind women from different areas within the region who would be willing to assist us with advocacy, presentations at conferences or meetings, or special projects of various kinds within their geographic area of the region.
The Committee will prepare periodic bulletins to keep such network volunteers informed about the activities of the Committee and about some of the issues we are dealing with. If you are interested in becoming a part of this network, please write to Barbara Pierce, member of the Committee, 237 Oak Street, Oberlin, Ohio 44074 or Penny Hartin, Committee Chair, New Brunswick Division, Canadian National Institute for the Blind, 231 Saunders Street, Fredericton, New Brunswick E3B 1N6, Canada.
Olivia Ostergaard, President of the Fresno Chapter of the National Federation of the Blind of California, reports with great joy that Kathleen Ann Egbert, First Vice President of the Fresno Chapter, and Daniel Larze Villarreal, President of the Monterey County Chapter, were married on Saturday, August 6, 1994. The wedding took place at the Fresno Wedding Chapel with family and friends present. Board members Ed and Toni Eames and Olivia and Amy Ostergaard were present. Congratulations to Kathleen and Danny.
Tatel Named to Federal Judgeship:
On June 29 we received a faxed press release from the Office of Communications at the White House. It announced President Clinton's nomination of David Tatel as a judge in the United States Court of Appeals. His credentials are impressive by any standard, and there is every reason to expect him to be a good judge. The gratifying and hopeful thing about this release, however, is that nowhere in it did the writer feel it necessary to mention Mr. Tatel's blindness.
Longtime Federationists will remember that in the late seventies we sued the Department of Health, Education and Welfare in an effort to establish federal enforcement of Section 504 of the Rehabilitation Act and other civil rights provisions. As a result more than a thousand additional jobs were established in the Office for Civil Rights of HEW, and a number of blind people were hired. Mr. Tatel was the Office for Civil Rights Director who more or less invited that lawsuit and saw to it that disabled people were hired as a result. Here is the press release:
The President nominated David S. Tatel to serve on the United States Court of Appeals for the District of Columbia Circuit.
"David Tatel has an extraordinary record of dedication and achievement in the legal profession," the President said today. "He has set an example for lawyers both in the private sector and in public service with his lifelong commitment to protecting and preserving the rights of all Americans."
David Stephen Tatel, fifty-two, one of the nation's leading education and civil rights lawyers, is currently a partner in the Washington law firm of Hogan & Hartson, where he manages the firm's Education Group. As head of this group, Tatel provides legal counsel to school districts, colleges, universities, and education associations throughout the country.
Prior to establishing his education law practice at Hogan & Hartson, Tatel served as director of the Office for Civil Rights in the U.S. Department of Health, Education and Welfare from 1977 to 1979. In that position Tatel spearheaded the Carter Administration's efforts to revitalize the agency and its enforcement of the federal civil rights laws.
Tatel came to the Carter Administration already experienced in the civil rights field. As a young lawyer at Sidley & Austin in Chicago, he began his legal career in 1967 arguing civil rights cases. In 1969 he became the first director of the Chicago Lawyers Committee for Civil Rights Under Law, where he developed a comprehensive civil rights agenda for the private bar. He assumed the directorship of the National Lawyers Committee in 1972, leading the national organization in an ambitious program to advance the rights of minorities and the poor through litigation involving housing, voting rights, education, and employment. Tatel joined Hogan & Hartson in 1974, where he continued his civil rights litigation practice in the Community Services Department, the firm's pro bono program. In 1975 he helped establish the Legal Services Corporation.
Tatel, who grew up in Maryland and now resides in Chevy Chase, graduated from the University of Michigan and the University of Chicago Law School. He has received many accolades for his work, including awards from the National Legal Aid and Defenders Association, the National Lawyers' Committee for Civil Rights Under Law, and the National Association of College and University Attorneys.
If confirmed, Tatel would fill the seat vacated upon Ruth Bader Ginsburg's elevation to the Supreme Court of the United States.
WordPerfect 5.1 Tutorial Available at Reduced Rate:
We have been asked to carry the following announcement:
WordPerfect 5.1 Tutorial on 2-track tape, four cassettes, substantial discount, regular $55, now $20 plus $5 shipping. To order, send payment to ARTS Computer Products, Inc., P.O. Box 604, Cambridge, Massachusetts 02140; or call (800) 343-0095.
Hoping to Buy:
We have been asked to carry the following announcement:
I want to purchase a Sharp Talking Time I and/or any Sharp Talking calculator. Call Jonathan at (619) 294-4646.
Audio Travel Club Available:
We have been asked to carry the following announcement:
Would you like to learn about the people and cultures of other countries? Would you like to make friends around the world using audio cassette, computer, or even writing? For details please contact Audio Visual Travel Club, 8 Hill Drive, Handforth, Wilmslow, Cheshire, SK9 3AR, United Kingdom; telephone (0625) 532-449.
We recently received the following letter from Betty Niceley, President of the National Federation of the Blind of Kentucky and member of the NFB Board of Directors:
I have been an active Federationist for more years than I care to remember, but I continue to be impressed by the frequent surges of excitement and the seeming newness of it all. In recent months my days have been punctuated with just such feelings as these while watching the National Federation of the Blind of Lexington take those first steps toward full-fledged Federationism. It was with open arms that this new chapter was received on April 16, 1994, into Kentucky's Federation family.
Certainly it is a challenge to work toward the organization of a new NFB chapter. Few feelings of accomplishment can equal those experienced while participating in an organizing meeting, which symbolizes the birth of a new family member to be guided and nurtured along the way. Nothing can be more rewarding than the thrill of being caught up in the spontaneous enthusiasm of those who catch a glimpse of the true meaning of Federationism for the first time. It is difficult to describe the pride which erupts each time new members attend their first state or national convention.
If you have been a part of our great movement for a long time but have not experienced the pleasure of working with a new member or chapter, don't waste any more time before availing yourself of the exciting opportunity to do so. We must never forget that none of the long journey we have traveled toward freedom and independence would have been possible without such tentative yet exhilarating first steps.
The officers of the new Lexington Chapter are Pam Wallace, President; Bobby Rolph, First Vice President; Warren McClendon, Second Vice President; Harley Canon, Secretary; and Sheila Combs, Treasurer. Congratulations to them and the chapter from all of us.
Combination Radios Available:
We have been asked to carry the following announcement:
FM Atlas Company announces a line of Brailled radios which get regular FM and AM programs plus the special radio reading services available on FM sub-carriers in many areas. The radios are fully tunable and can be taken on trips so that you can hear the reading services in cities you visit. A cassette catalog will be available shortly from FM Atlas. To be on the tape catalog mailing list for a minimum of three years, send $2 to P.O. Box 336, Esko, Minnesota 55733-0336; phone, (218) 879-7676.
Gift Boxes of Cheese Available:
Kathleen Sebranek, Vice President of the National Federation of the Blind of Wisconsin, has asked us to carry the following announcement:
The National Federation of the Blind of Wisconsin is selling gift boxes of cheese. They contain NFB literature along with a selection of Wisconsin's world-famous cheeses. The smaller three- pound box contains one pound of delicious Wisconsin colby cheese and one pound each of America's favorites, Wisconsin mild and aged cheddar cheeses. The larger five-pound box contains one pound of Wisconsin colby cheese, one pound of Monterey jack cheese, and three pounds of Wisconsin mild and aged cheddar cheeses. These items are packaged in gift boxes decorated with Holstein cows.
Send your pre-paid order of $14.95 for the three-pound box or $19.95 for the five-pound box within the continental United States to Wisconsin Gift Cheese Box, 1612 Winnebago Street, LaCrosse, Wisconsin 54501; or call (608) 784-2343. For orders outside the continental United States, add $15.00 per box. Payment can be made with check or money order. Thank you for your support. Orders received by December 10, 1994, will be shipped before Christmas. Boxes can be shipped at any time of the year. Include your name, address, telephone number, and box size with your order.
From the Editor Emeritus: Many who have attended NFB Conventions in recent years will remember Virginia Okamura. She was a woman who was self-effacing, willing to do whatever was needed, and not anxious to have the limelight. She was known and loved by many blind people throughout the world. Here in part is what John and Mary Rowley, Federationists from New Mexico, wrote to Chuji Sashida under date of August 24, 1994:
"Thank you so very much for your kind letter of August 10 telling us the very sad news of Virginia Okamura's death July 1. Although we had known her only a few years, we felt her death very strongly as indeed she put her entire spirit and heart into helping blind people help themselves. She was a tireless worker for the betterment of the lives of the blind, in Japan, and elsewhere.
"We have made a small memorial donation to the NFB scholarship fund on her behalf and trust this will be in the spirit that she would have wished."
We have been asked to carry the following announcement:
I have for sale a Xerox Personal Reader, model M-7315-20 with desk-top reader only (not the hand-held unit). This equipment is three years old but was used very little by my father before his death. The reader includes original packing cartons, teaching tapes, and manuals. He originally paid $10,000, but I am asking $2,500 or best offer. If interested, contact Mrs. Nancy Wible, Stonewood Farm, 823 Warm Springs Road, Winchester, Virginia 22603.
Ray Starr Tapes Available for Christmas:
We have been asked to carry the following announcement:
Christmas isn't far away, so for you shoppers here is a music package. Three country music cassettes of Ray Starr favorites--thirty-five selections in all. This offer includes a free Christmas tape with each order. Make checks payable to Ray Rokita in the amount of $25.00. Send to Ray Rokita at 850 Armstrong Road, Lansing, Michigan 48911-3910.
Durward McDaniel Dies:
From the Editor Emeritus: I have just been informed that this morning (September 6, 1994) Durward McDaniel died of a heart attack. Durward was one of the last of the leaders of the opposition in the NFB Civil War, which took place from 1957 to 1961. He and I were on opposite sides, but he was one of the toughest and most effective of the dissenters. I first met Durward in 1952, and until the days of the Civil War we often worked together on committees and on various other organizational matters.
Braille Environmental Publication for Youngsters Available:
We have been asked to carry the following announcement:
Global Response is an international environmental education and action network. Its monthly Young Environmentalist's Action (YEA) gives young people an opportunity to learn about environmental issues and take an active role in protecting their Earth. YEA is available to parents, students, and teachers in Braille.
Each monthly Braille YEA highlights a specific environmental issue. YEA topics include rainforest destruction, endangered species protection, marine mammals, and air and water pollution. YEA provides background information on the issue, recommends actions to take, and gives the names and addresses of the corporations or governments who can make a positive difference. Included in YEA is information about the country, culture, ecosystems, and endangered species that are affected by the issue.
There is no mandatory fee to receive YEA, although donations are accepted. To receive the Braille YEA, please contact Global Response, P.O. Box 7490, Boulder, Colorado 80306-7490, and ask for the Braille YEA; or call (303) 444-0306.
A Thank You to Federationists:
We recently received the following letter from Maria Buterbaugh, the Federationist from Phoenix, Arizona, whose little son Justin died tragically at our Detroit convention last summer. It is self-explanatory. Here it is:
As many of you know, my beautiful son Justin Kyle Buterbaugh was taken to be with God on July 5, 1994, during the NFB convention in Detroit, Michigan.
I wanted to thank everyone in the NFB personally for your loving kindness, generosity, and support during this most difficult time in my life. I received so many letters, cards, and financial contributions that it would be impossible for me to contact each of you individually. Many of the blessings I received were from people I'd never met. Just as there are no words to describe my pain and loss, there are no words to express how much your support has meant to me. All of the funeral expenses were covered by your contributions to the NFB fund.
I'd also like to thank those of you in Detroit who helped me through this tragedy by holding me, listening to me cry, and taking care of all the detailed arrangements.
As the parent of a blind child I have learned so much about the importance of raising our children to be happy, confident, and independent individuals with high expectations. I am sure that I will stay involved in teaching and encouraging parents to have proper attitudes in raising our blind youngsters. It's the support of the NFB that has given me the courage to do this.
New Resource Available from NFB Materials Center:
This two-tape, two-track set of tapes for blind parents is recorded at 1þ ips and is edited by Barbara Cheadle, President of the National Organization for Parents of Blind Children (NOPBC). For the most part these articles are reprints from the Braille Monitor. The material is tone indexed. The Table of Contents includes "Blindness Isn't a Handicap, It's a Nuisance" by Deborah Scoblionkow, "To be a Parent" by Gary Wunder, "I Am a Blind Mother Fighting to Keep My Children From Corruption" by Ramona Walhof, "Blindness: A Matter of Perspective" by Barbara Walker, "Whose Blindness is It?" by Lauren L. Eckery, "What Color is the Sun?" by Lauren L. Eckery, and "I Was a Young Mother Being Stifled by Blindness" by Barbara Pierce. The set is free upon request to the NFB Materials Center, 1800 Johnson Street, Baltimore, Maryland 21230; phone, (410) 639-9314, between 12:30 and 5:00 p.m. Eastern Standard Time. Ask for the cassette "Materials for Blind Parents."