THE BRAILLE MONITOR
Vol. 48, No. 7 July 2005
Barbara Pierce, editor
Published in inkprint, in Braille, and on cassette by
THE NATIONAL FEDERATION OF THE BLIND
MARC MAURER, PRESIDENT
1800 Johnson Street
Baltimore, Maryland 21230-4998
telephone: (410) 659-9314
email address: [email protected]
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Monitor subscriptions cost the Federation about twenty-five dollars per year. Members are invited, and nonmembers are requested, to cover the subscription cost. Donations should be made payable to National Federation of the Blind and sent to:
National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230-4998
THE NATIONAL FEDERATION OF THE BLIND IS NOT AN ORGANIZATION
SPEAKING FOR THE BLIND--IT IS THE BLIND SPEAKING FOR THEMSELVES
Vol. 48, No. 7 July 2005
by Barbara Pierce
by Paula Kimbrough
A Boa in My Brailler............................................................................................................................
by Barbara Loos
Blind Student Focuses on Her Goal
To Become Elementary School Teacher...............................................................................................
By Kay Randall
The Variables of a Blind Person’s Math Experience..............................................................................
by Cary Supalo
Braille Readers Making a Difference....................................................................................................
by Barbara Pierce
Beginnings and Blueprints:
Early Education, Empowerment, and the Jernigan Institute....................................................................
by Mark A. Riccobono
Air Force’s Best..................................................................................................................................
by Jan Jonas
BrailleNote or PAC Mate:
A Matter of Personal Preference..........................................................................................................
by Danika Rockett
Clinical Trials Fighting Blindness...........................................................................................................
by David Brown
Copyright© 2005 National Federation of the Blind
[LEAD/PHOTO CAPTION: The picket line on the Maryland Avenue side of the Department of Education in Washington, D.C., began forming shortly after ten a.m. on Thursday, May 26. Disabled people, rehabilitation professionals, and other concerned citizens from as far away as Hawaii gathered to register their dismay at the Bush administration’s plan to dismantle the country’s rehabilitation program in the name of efficiency and cost-cutting.]
[PHOTO/CAPTION: The light wind caught picket signs and banners, making them difficult to hold, but the warmth of the day left people grateful for the breeze.] 
[PICTURE/CAPTION: Probably walking a picket line doesn’t make much sense to guide dogs, but they followed orders anyway.] 
[PHOTO/CAPTION: People with all sorts of disabilities took part in the picket.] 
Feet on the Street to Save Rehab
by Barbara Pierce
In recent months Department of Education (DOE) officials have signaled more and more clearly that the Rehabilitation Services Administration was in the crosshairs as they made plans to divert funding from rehabilitation to other DOE programs. Throughout the spring we have reported on initiatives being planned that will undermine whatever positive steps RSA has made in recent years. During the months since RSA commissioner Joanne Wilson resigned in protest, the disability community has debated what actions it should take to bring this crisis to the notice of Congress and the public.
Eventually the NFB took the initiative to organize a rally in front of the Department of Education building, within walking distance of the hotel we use when we go to Capitol Hill for the Washington Seminar every February. In early May we chose a date, May 26, and began soliciting cosponsors. By the day of the picket and rally, forty-eight organizations had joined the NFB in sponsoring the event.
By Wednesday morning hundreds of people had arrived on Capitol Hill to talk with members of Congress and their staffs about the emergency. Here is one of the documents NFB members circulated:
STATEMENT OF SUPPORT FOR VOCATIONAL REHABILITATION:
DON'T LEAVE BLIND ADULTS BEHIND
The program known as "Vocational Rehabilitation," authorized in Title I of the Rehabilitation Act of 1973, as last amended in 1998, provides almost 80 percent of the funds used by states to pay for training and adjustment services provided to persons with disabilities. These services are essential for blind people and others with disabilities to achieve productive employment and self-support goals and are planned to meet individual needs. This is why vocational rehabilitation has enjoyed consistently strong bipartisan support in Congress throughout its eighty-five-year history.
The federal funds are paid to states through formula grants as long as certain requirements are met. Having a specific agency with full-time personnel dedicated to delivering vocational rehabilitation services is one of the most essential federal requirements, except states may have two such agencies if one of them is devoted to serving the blind. States receive technical assistance and monitoring through the Rehabilitation Services Administration (RSA), located in the U.S. Department of Education.
Without announcing a plan to redesign the vocational rehabilitation program, the Bush administration has initiated several actions to reduce emphasis on specialized services for the blind and others with disabilities. These include:
* Seeking Congressional authorization for states to consolidate vocational rehabilitation with job training and employment programs for youth, dislocated workers, and other unemployed adults under a proposal known as "WIA Plus Consolidation";
* Closing all of the Rehabilitation Services Administration (RSA) regional offices used to monitor and assist states with implementation of Rehabilitation Act programs;
* Reducing the RSA professional and support staff by approximately 50 percent, with a disproportionate impact on jobs held by disabled employees;
* Possible elimination of the RSA Division for the Blind and Visually Impaired, which supports nationwide implementation of the Randolph-Sheppard Act, provides essential guidance to states for specialized services to working-age blind adults, and coordinates independent living services for seniors losing sight;
*Changing the head of RSA from a presidentially-appointed position requiring Senate confirmation to a Department of Education staff position not appointed by the president and not subject to Senate confirmation.
All members of Congress are urged to express a strong commitment to effective vocational rehabilitation programs by taking the following actions:
* Advise the chairmen and ranking minority members of the authorizing and appropriations committees that the administration’s vocational rehabilitation initiatives are unacceptable;
* Send or sign on to a letter (see attached draft) to Secretary of Education Margaret Spellings supporting vocational rehabilitation as an identifiable, state-administered program with continued strong federal leadership.
Blind Americans are counting on you for support. Please help to maintain vocational rehabilitation as a vital service to meet our unique employment and independent living needs.
[PHOTO/CAPTION: At noon Thursday the crowd gathered to chant and cheer in front of the platform before settling down to listen to speakers.]
The day on the Hill was cool and cloudy, but Thursday was clear and sunny. For almost two hours picketers marched and chanted, while volunteers leafleted pedestrians on nearby streets. By noon the crowd had gravitated to the Department of Education courtyard, where a platform had been erected with a banner across the back listing many of the sponsors. James Gashel, NFB executive director for strategic initiatives, served as master of ceremonies. He called the crowd’s attention to the large empty chair on stage ready for Secretary of Education Margaret Spellings so that she could see and hear what disabled Americans think of the department’s plans to dismantle RSA.
A representative from each of the rally sponsors had a moment to introduce his or her group and say something about the situation in which we find ourselves. Then each of the four past RSA commissioners who are concerned about the current Bush administration initiatives spoke briefly. They were Edward C. Newman, commissioner in the Nixon administration; Robert R. Humphreys, commissioner in the Carter administration; Fredric K. Schroeder, commissioner in the Clinton administration; and Joanne Wilson, commissioner in the Bush administration.
[PHOTO/CAPTION: Front left an American Sign Language interpreter translates what is being said. Jim Gashel stands with the empty Spellings chair in front of him, listening to Fred Schroeder addressing the crowd, while to the right Joanne Wilson stands at the top of the stairs and NFB President Marc Maurer stands on the steps below her.]
All speakers were commendably brief, though passionate in their remarks. As an example of the views expressed, here is what Fred Schroeder said:
Remarks at the May 26 Rally
by Fredric Schroeder
I grew up believing that we could expect, indeed require, that government be honest and forthright, truthful and accountable--that government officials say what they mean and mean what they say.
Department of Education officials say that the plan to close the RSA (Rehabilitation Services Administration) regional offices was simply the outgrowth of an ongoing management agenda to make government more efficient. The truth is that the plan to close the regional offices was made in spite of a GAO (Government Accountability Office) study and numerous internal department studies documenting the value of the regional offices. Maybe the department has conducted new studies, new analyses, but if so, would you not expect that any new study, new analysis, would be based on discussions with the blind and other consumers, on discussions with state and private VR (vocational rehabilitation) agencies? Wouldn't a new study, new analysis, at least include talking with the commissioner of the Rehabilitation Services Administration and members of her staff? The department says that the plan to close the regional offices was the result of study and analysis; the truth is that the decision was made in secret with no study, no analysis, no planning, and no consultation with blind people, advocates, or even the commissioner of RSA. We say to the department, be truthful; say what you mean and mean what you say.
Department officials say that the closure of the regional offices reflects good stewardship and the administration's commitment to services not bureaucracy, that the $7 million saved will be used to expand services for transition-age youth--less fat and more money for people with disabilities. The truth is that the department is reducing its support of direct services for consumers, cutting programs--not increasing support. The department's current budget request--the same budget request that includes the elimination of the RSA regional offices--eliminates funding for the Supported Employment Program, $37 million; eliminates funding for the Projects with Industry Program, $22 million; eliminates funding for the Migrant and Seasonal Farm Workers Program, $2.5 million; eliminates funding for the Special Recreation Program, another $2 million--$63 million in cuts overall to direct services--not an increase. Department officials say they are trimming fat to direct more money to client services. They say it is a $7 million increase, but the truth is that the department’s budget cuts $63 million in valuable direct service programs. The department is walking away from people with disabilities, not strengthening its support. We say to the department, be truthful; say what you mean and mean what you say.
Department officials say that by cutting RSA’s staff in half, eliminating the regional offices, and consolidating functions into the central office, RSA will be able to provide better technical assistance and better monitoring; they say the agency will become more efficient and responsive and that the elimination of the regional offices will not weaken the agency’s commitment to specialized services or programs. In fact they say that specialized services will receive better support under a centralized structure. The truth is that the RSA reorganization plan shows the elimination of the blindness division, the elimination of the Randolph-Sheppard branch, the elimination of the deafness and communicative disorders branch--no support for any specialized service or program. Department officials say that specialized services will receive more attention and better support. But the truth is that the department’s reorganization plan eliminates support for specialized services and special populations. We say to the department, be truthful; say what you mean and mean what you say.
We are here today to express our objection to the planned closure of the RSA regional offices and to the elimination of the department’s commitment to specialized services. We are here today to say to the department, these programs do not belong to you; they belong to us--to the people of America and to the people who need the opportunity to receive the training, supports, and encouragement to live normal, productive lives. We are here today to say that we want the RSA regional offices restored; we want the blindness division and the Randolph-Sheppard and deafness branches restored; and we are here today to say we expect department officials to restore honesty and integrity to their work, to work openly and honestly with consumers and other stake-holders. And we are here to say that we will not give up; we will not give in; and, unlike the department officials who set these damaging changes in motion, we are truthful; and we say what we mean and mean what we say.
The concluding speaker was President Maurer. As he stepped away from the podium, dirge-like music began playing over the loudspeakers. Jim Gashel explained that though they had been invited, no one from the Department of Education had seen fit to come out and take note of the dissatisfaction with their actions being expressed by disabled Americans and our friends. Suddenly he corrected himself. A figure was emerging from the direction of the department building. It was the Grim Reaper, more than seven feet tall, swathed in a filmy black cloak and carrying a scythe (that was, conveniently enough, of a length to be used subtly as a white cane. In front of him were six pall bearers dressed in black tie and carrying a casket. They placed it in front of the platform and opened it. The Grim Reaper, who was wearing a sign around his neck identifying himself as the Department of Education, followed them forward and took up his post in front of the casket.
[PHOTO/CAPTION: Kevan Worley, dressed as the Grim Reaper and representing the Department of Education, destroys signs representing the hopes and dreams of disabled Americans.]
As Jim Gashel described the unfolding scene, a line of disabled people approached the Grim Reaper. Each was carrying a sign with a word or phrase on it. The Grim Reaper took each and tore it to pieces before crumpling it and throwing it into the casket. Twenty signs, saying things like “Opportunity,” “Choice,” “Freedom,” “Hope,” and “The Future” were crushed by the Department of Education before a crowd of sign bearers revolted and tipped him over into the casket. Then they closed the lid, and the pall bearers bore him off stage.
[PHOTO/CAPTION: Six pall bearers carry the casket containing the Grim Reaper away from the rally.]
That action concluded the rally proper. So what difference did a thousand or so protesters have? It is still too early to know. Congress will have to find a way to intervene if the Department of Education is to be stopped. Whether our senators and representatives will bother to make the effort depends on those who care about whether the disabled people who come after us will be forgotten and left out, which is clearly what the Department of Education has in mind. Each of us must write to Secretary Spellings to register our objections to what the department is doing, and we must let our members of Congress know what we have said to her. We must also educate our communities about this crisis. After all, it is those who are not at the moment disabled who have the most to lose from the destruction of the rehabilitation system.
[COLLAGE/CAPTION: The central and left panels of this collage are photographs of the monument to Louis Braille in the central square of Coupvray, France. The square, where as a child Braille would have spent much time, is now known as Braille Square. The bust at the top of the monument was sculpted in bronze in 1887 by Etienne Leroux from the death mask of Braille created by Jouffroy. In the left panel Kenneth Jernigan examines a low-relief depiction of Louis Braille teaching a blind child to read that appears on one side of the monument to Braille. In the right panel Dr. Jernigan stands in one of the downstairs rooms in the Braille home, now a museum. A circular portrait of Louis Braille hangs on the wall behind him.]
Paula Kimbrough is the former publications editor at Enabling Technologies and originally wrote the first version of this article in 1998 for Enabling's Web site, <www.brailler.com. Over the years, as new sources became available, “How Braille Began” was updated, amended, and corrected many times. This newest version appears courtesy of Enabling Technologies.
In earlier jobs Paula did computer training and administered an access technology subsidy program at Associated Services for the Blind and was also an editorial assistant for Dialogue Magazine. She is a graduate of Excelsior College in Albany, New York. Paula's email address is <[email protected]>. Much more on Braille's history will be available soon in a definitive new biography, Louis Braille: A Touch of Genius by Michael Mellor, which will be published later this year by National Braille Press.
The improbable chain of circumstance that would give birth to Braille began after King Louis IX of France suffered a crushing defeat in the Sixth Crusade. Already a religious man, Louis returned to Paris certain that God was making him suffer to teach him humility, which intensified his interest in charity. Among other good works he endowed one of the first formal institutions for the blind in the world in the year 1260, the Quinze-Vingts hospice (in English, "fifteen score" or 300).
This name supposedly referred to the first inhabitants, said to be 300 French knights whose eyes were put out as a punishment by the Saracens during the failed crusade. This horrific tale is not true; it originated two centuries later in a fundraising letter to the pope. After the story was printed in a book in 1499, however, legend kept it alive for 500 years. This may mark another first--institutional fundraising as modern people would recognize it.
The Quinze-Vingts did provide a unique shelter and community for blind Parisians. The largely self-governing hospice officially licensed its blind inhabitants as beggars in uniform, apparently as a kind of accreditation council in a world that feared being cheated by able-bodied frauds. The inhabitants (who never reached 300 in number at any one time) led lives that were more regulated but probably more secure than those of many of their contemporaries. Residents kept some of the proceeds of their own begging, but upon their deaths had to leave a portion of their property to the hospice.
King Louis IX could not resist another attempt at a crusade in 1270. Almost at once he died of dysentery when a fever swept the French camp in Tunis. In 1297, the church canonized him as "St. Louis." He would also one day have a city named after him that, in an odd coincidence, would play an important role in the acceptance of Braille.
St. Ovid's Fair was one of Paris's lively and popular religious street festivals. Beginning in 1665, the fair ran from August 14 to September 15 each year and featured merchants, puppet shows, tightrope walkers, jugglers, animal acts, and food vendors. By the 1770's the fair moved to the Place de la Concorde, near today's Hotel Le Crillon.
In 1771 a young man named Valentin Haüy visited St. Ovid's Fair and stopped at a cafe for lunch. What he saw there would change not only his own life but the lives of millions of blind people forever. In a crowd-pleasing gimmick that appeared only that year, a group of eight blind men from the Quinze-Vingts were performing a slapstick comedy act, pretending to be what many other blind people actually were--musicians. They wore dunce caps and huge cardboard glasses. A ninth man in a red dress and donkey's ears hung from the ceiling and beat time, suspended on a perch shaped like a peacock. The so-called musicians clowned for the crowd by singing and making squawking, discordant noises on old violins.
The act was a hit. An almanac published a few years later said, "One could not have an idea of the success which this joke obtained," but Haüy felt "a very different sentiment" and was so sickened by the performance that he could not finish his lunch.
Valentin Haüy was born in 1745 into a family of weavers. His father worked full-time at the loom and got a second job ringing the Angelus bells at the nearby Premonstrant Abbey. The monks there educated both Valentin and his talented brother, Renè-Just, who became a famous scientist. Valentin became a skilled linguist who spoke ten living languages in addition to ancient Greek and Hebrew. In 1783 he was named interpreter to the king.
Haüy became acquainted with Abbé de l'Epée, founder of the first school for the deaf (also in Paris), and learned the manual alphabet. Haüy's own idealism and energy would prove extraordinary, and initially so would his luck. In the spring of 1784, while on another walk in Paris, he encountered the perfect student. In the most popular version of the story, as Haüy departed Saint Germain des Prés Church after services in 1784, he pressed a coin into the hand of a young blind boy begging near the entrance of the church. The boy instantly called out the denomination, believing Haüy had accidentally given him too large a sum. Haüy then had a startling insight that the blind could learn a great deal, perhaps even reading, using the sense of touch. This tale of a waif being plucked "from the gutter," as one author put it, may also not be true. There is some evidence the young beggar had heard of Haüy's interest in educating the blind and by some means was able to put himself in the path of opportunity.
However they met, the beggar, seventeen-year-old François Lesueur, became Haüy's first pupil. François had been blind since infancy and had spent much of his short life begging on the streets to support his parents and five siblings. Haüy made up François' lost earnings from begging while he taught him to read by using wooden letters he moved around to form words. François was a very quick study and also the source of a major new insight. While looking for some object on Haüy's desk, François ran his hand over a funeral card on which the printed letter "o" was struck unusually hard, raising it enough to decipher by touch. Within six months his mastery of the basic elements of primary education stunned France's top scholars and scientists when Haüy brought him for a demonstration at the Royal Academy.
Haüy made the most of this triumph, soliciting help from celebrities of the day, such as Maria Theresia von Paradis, a young blind girl with an international reputation as a piano prodigy. She shared her own literacy methods, which included a writing system of pinpricks. Maria also told Haüy of her correspondence with a talented blind German student named Weissenbourg, who acquired considerable education through the resourcefulness of his tutor Christian Niesen. Among Niesen's devices were a bent-wire alphabet and tactile maps made from silk embroidered onto cardboard. He also used a board similar to that of Nicholas Saunderson, the blind British mathematician, who had devised his own system for working out complex calculations. Saunderson, unfortunately, left no instructions on how the board worked. After his death his own family had to ask one of his colleagues how to use it in order to publish his last book.
Haüy originally operated the school from his home, but as more pupils came, he was able to attract sufficient royal support to expand. He moved the school first to the Rue Coquilliere and then to the Rue Notre-Dame-des-Victoires. Haüy soon had forty-eight pupils, both boys and girls. Fourteen married couples eventually formed within the student body.
Within two years the Academy of Music sponsored benefit concerts for the school while Haüy kept the royal funds flowing by taking the blind students to Versailles to entertain the king at Christmas with demonstrations of reading, arithmetic, and using tactile maps. Since the school had almost at once established a print shop run by the students to make embossed books, Haüy had them make up a run of specially-bound samples for the nobles at court. The text was Haüy's own landmark book, An Essay on the Education of the Blind. One of these court performances was attended by Marquis d'Orvilliers, a nobleman from a small village east of Paris--Coupvray.
More than twenty years later in Coupvray Louis Braille was born, the fourth child of a saddle maker. In 1812 at the age of three, Louis injured his eye in an accident while playing with his father's tools. One local legend has it that the distraction that caused Louis's father to leave his workbench unattended (with its dangerous attractions for a curious toddler) was the news of Napoleon's army leaving France for the disastrous invasion of Russia.
Despite (or perhaps because of) the ministrations of the local healer, an old woman who first treated Louis's damaged eye with lily water, and those of an eye doctor in a nearby town, infection set in. Other ineffective treatments followed, including a dose of calomel and a laxative. Over the next year the infection spread to the other eye. Louis Braille gradually became blind.
To add to the troubles of the Braille family, Napoleon's constant war with the rest of Europe caused their town to be overrun by armies--not only the retreating French, but their enemies, the Prussians and the Russians. Over the two years from 1814 to 1816, a constant stream of soldiers camped in the Brailles' modest three-room home. Their never-ending demands for food, animals, and lodging caused severe hardship for the whole town. By 1816 war deprivations wore down the health of the citizens, and a smallpox epidemic sprang up. People, including Louis Braille's father, did not trust the government-promoted vaccinations, and many in the town fell ill.
Fortunately, at about the same time other new people also came to Coupvray--a priest, Abbé Jacques Palluy, and a schoolmaster, Antoine Bécheret. They came to know Louis well and came up with the then revolutionary idea of allowing him to attend regular school. Both Louis's parents could read and write, and his older siblings had all attended the same school as children. Louis did so well there that, when the government decreed new local school methods that would have prevented Louis from continuing his education, Bécheret and Palluy approached the local nobleman for help.
The nobleman was Marquis d'Orvilliers, a survivor of the recent smallpox epidemic, who, having seen Valentin Haüy's students perform at Versailles years before, agreed to write to the current director of the school, Sébastien Guillié. Louis's parents were not initially convinced that school in Paris was a good idea, but they were eventually persuaded, and Louis received a scholarship. In February 1819 ten-year-old Louis and his father made the four-hour stagecoach trip to Paris.
Louis became the youngest student at the school and was assigned number seventy, which was attached to his bed with the straw mattress and to his locker, as well as to a badge he wore on his new uniform. This regimentation of identity was not the only change for the school since the happier times thirty years before under Valentin Haüy.
After the revolution many of the nobles who had once helped the school were themselves killed, jailed, or in flight from France. For a time the school moved to a series of different venues and eventually shared an abandoned convent with the school for the deaf with unhappy results. The blind students were ultimately forced into the Quinze-Vingts, now overcrowded and chaotic and the home of last resort for elderly blind beggars.
Dr. Guillié, running the school for the blind at the time of Louis's admission, was an ophthalmologist by vocation who had founded the first eye clinic in Paris. He subsequently survived the many changes of government during the French Revolution, the Napoleonic era, and the Bourbon restoration. Guillié's interest in reestablishing the school for the blind once the king returned to power was only mildly humanitarian, for he reclaimed only the most promising students from the Quinze-Vingts and sometimes used students for highly questionable medical experiments. He also made a fateful choice of buildings--the former St. Firmin seminary on Rue Saint-Victor.
The old seminary was by then already over 500 years old and had endured hard use as, among other things, an orphanage founded by St. Vincent de Paul (the patron saint of charitable societies) and a house of ill repute. During the worst times of the Revolution, St. Firmin's was used as a prison for uncooperative priests and others with ties to the old regime (including, briefly, Valentin Haüy's own brother) who refused to swear allegiance to the new government. In a systematic massacre lasting several days, the imprisoned priests were murdered there in 1792. The interior was dank and cramped and in poor repair, with narrow stairwells, tiny rooms, and walls clammy to the touch. It smelled of mildew and other "putrid emanations." St. Firmin, however, had one surpassing charm for Guillié. Its existing floor plan enabled strict and total segregation of the sexes, which was of great importance to him. He even appointed a new strict female headmistress to supervise the girls.
Guillié was careful to document not only his many frugalities in the operation of the school to get maximum value out of food and fuel, but much of his personal philosophy as well. The year Louis Braille was admitted, Guillié referred to blind people among other things as "degraded beings, condemned to vegetate on the earth."
Not much vegetating went on during Guillié's tenure, and for the most predictable of reasons. Goods the students produced were sold in Paris shops and produced a vital stream of revenue, thus creating the first sheltered workshop. Guillié instituted harsh schedules and discipline to drive up productivity. Among their other skills the students wove the fabric for their own uniforms, which were, depending on the account, either blue or black. They made slippers, buggy whips, fishing nets, and straw chair bottoms. Ever enterprising, Guillié also obtained a contract for the school to weave sheets for Paris's huge system of public hospitals. The size of this task becomes apparent in light of the fact that the largest of these hospitals, La Salpêtriere, had a capacity of more than 10,000 inmates.
For teaching, Guillié had relied heavily on older students acting as tutors or "repeaters" to give lessons aurally to younger students. Although the repeaters did not know it, Guillié had some success in reestablishing government support for the school and received a small stipend for the older students' instructional time, which he personally pocketed.
The students were essentially confined in a workhouse as bleak as any in a Dickens novel. Classes and work occupied a rigidly scheduled thirteen-hour day. Students had one bath a month, scarce heat, and poor food--mostly beans and porridge. The school's muddy drinking water was unfiltered, direct from the River Seine. A dinner of dry bread (served in solitary confinement lasting up to two days) was a standard punishment for rule infractions.
Guillié rationalized his methods as supremely enlightened, because, "all blind people have a decided taste for independence and liberty. Nothing, however, is more contrary to their real interests than the use of a thing which they could only abuse. The art of those, therefore, who are with them, consists less in satisfying them than in making them believe they are satisfied."
Guillié's direction of the school had one bright spot. He apparently had a personal love of music, and thus music lessons were compulsory for all students. However much Guillié boasted of scrimping on food and heat, he spared no effort finding instruments for a school orchestra and recruiting excellent volunteer teachers from among local musical professionals. For students who were naturally talented, this was probably the happiest part of their school years.
Louis Braille adjusted quickly to the life at school and made the first of the many friends there he would keep all his life, fellow student Gabriel Gauthier, who was one year older.
The few wealthy potential patrons who remained were often taken on tours through the school and workshop, with the students' reading of the few embossed books a highlight of the trip. Haüy's original method of embossing books was to apply soaked paper to raised letter forms so that the tactile shape of the specially crafted large round cursive letters remained after the paper dried. Pages were then glued back-to-front to produce a two-sided sheet. These books were, of course, extraordinarily slow and difficult to make and almost as slow and difficult to read, since the shape of each letter had to be traced individually. The finished books were often too heavy for the smaller students to lift. At the time of Louis Braille's admission, the school, now over thirty years old, had one hundred pupils and a total of fourteen embossed books.
The school was now under the control of a committee selected by the Ministry of the Interior and dominated by a clique of nobles. In 1821 it became apparent that Guillié was indeed right to fear the power of sex, although not because of anything the students did. He himself was abruptly fired by the Ministry for having a love affair with the female headmistress, who may have become pregnant.
The school's new director André Pignier was horrified by the decrepit building and immediately resolved to improve conditions, first instituting two outings a week so students could breathe fresh air and get some exercise away from their desks and workbenches. Students began to travel through the city, all gripping one long rope as a guide, to attend Mass on Sunday at St. Nicholas du Chardonnet Church and to go on a Thursday afternoon excursion to a local botanical park.
Another Pignier reform was to stage a public celebration of the school's history, at which the guest of honor would be founder Valentin Haüy. Haüy, now an old man, had not been inside the school in years. Losing control of the school in the aftermath of the Revolution, he had struggled to maintain some teaching activity with private students and to survive on a small government pension. Finally, dismissed by Napoleon in 1802, he left France, accompanied by one of his most promising students, Alexandre Fournier. Together they spent over a decade in exile working with blind students in other European countries, including a long, frustrating stay in Russia trying to start a school there. Schools for the blind were an idea whose time had definitely come, with Liverpool (1791), Vienna (1804), Berlin (1806), Amsterdam (1808), Dresden (1809), Zurich (1810), and Copenhagen (1811) appearing in rapid succession using many of Haüy's ideas and methods. Upon his return to France Haüy, exhausted, destitute, and himself nearly blind, had been banned from the school by the unsympathetic Guillié.
On the day of the ceremony to honor Haüy, Louis Braille, now twelve, along with several other students gave a musical program of songs from the school's early days and a reading demonstration using the original embossed books. Sometime that day Haüy, now seventy-six, and young Louis Braille may have met face to face. The following year Louis Braille was one of a small group from the school to attend Haüy's meager funeral.
Another visitor a short time later would have an equally large influence on Louis Braille's future. Charles Barbier de la Serre was another quick-witted survivor of the political turmoil that had engulfed France. Barbier, the son of the controller of the farms of the king, was admitted to a royal military academy in 1782. He fled the Revolution by spending some time in the United States as a land surveyor in Indian territory and returned to France by 1808, where he joined Napoleon's army and published a table for quick writing or "expediography," followed a year later by a book describing how to write several copies of a message at once.
Barbier's interest in fast, secret writing was grounded in his war experiences. The French army under Napoleon had been defeated for the last time at Waterloo in 1815, but before that they had nearly conquered Europe and were considered even by their enemies to be the best artillerymen in the world. Barbier had once seen all the troops in a forward gun post annihilated when they betrayed their position by lighting a single lamp to read a message. A tactile system for sending and receiving messages could be useful, not only at night, but in maintaining communications during combat with its unique horrors for artillery crews. Dense, blinding smoke and thunderous noise combined to create hellish confusion. If the horses that transported the huge guns were hit, the surviving crew would find itself immobilized in a tangle of guns, harnesses, and dead or dying animals with no means of escape as the bullets flew.
Barbier and the students of the Institution for Blind Children probably first encountered each other when both were exhibiting their communication methods at the Museum of Science and Industry, then located in the Louvre. Barbier had a device that enabled the writer to create messages in the dark; the students were reading, with the usual painful slowness, Haüy's books of embossed print letters. Barbier decided to take his own dot- and dash-based night-writing artillery code to the Royal Institution for Blind Children and interested Pignier, the new director, in his system. Pignier arranged a demonstration and passed around a few embossed pages of dots to the students.
Louis Braille was thunderstruck when he first touched the dots of the night-writing samples. He had often played around with tactile writing at home on summer vacation in Coupvray. Neighbors later recalled that as a child Louis had tried leathers in various shapes and even arranged upholstery pins in patterns, hoping to find a workable tactile communication method, but with no success.
Once he touched the dots, he knew he had found his medium and quickly learned to use Barbier's "ruler," which greatly resembles a more complex version of today's slate. He, his friend Gabriel, and other boys at the school taught each other the code by writing each other messages.
Louis was also quick to see the problems with Barbier's system, which was never actually used by the army. Sonography used a huge cell, more than a fingertip can cover. The cells stood for thirty-six basic sounds instead of letters. A large customized board, laid out six cells across and six cells down, was used to write the sound symbols. There were no punctuation marks, numbers, or musical signs, and there were horizontal dashes in addition to the dots.
When Louis met with Captain Barbier to talk about his ideas to improve the code, the captain, by now in his mid-fifties, was probably at first incredulous and then annoyed at having his ideas questioned by someone so young, inexperienced, and blind as well. Now that Napoleon's adventures of military conquest were ended, it seems likely Barbier had hopes of obtaining some kind of government recognition for the invention on which he had worked so long if it were adopted by the blind.
Intimidated by the captain, Louis stopped asking his advice altogether and instead went to work experimenting with the code on his own. He had little spare time; he won prizes that semester in geography, history, mathematics, and piano, while also working as the foreman of the slipper shop at the school. Still, late at night and at home in Coupvray during the summer, Louis tried various modifications that would enable the unique letter symbols to fit under one fingertip.
In October of 1824 Louis, now fifteen years old, unveiled his new alphabet right after the start of school. He had found sixty-three ways to use a six-dot cell, though some dashes were still included. His new alphabet was received enthusiastically by the other students and by Pignier, who ordered the special slates Louis had designed from Captain Barbier's original. Gabriel Gauthier, still Louis's best friend, was probably the very first person ever to read Braille.
The obvious usefulness and popularity of Louis's invention did not make other parts of the students' lives easier. Bad times in France in 1825 caused the school's rations of fuel to shrink, and the already spare diet was reduced to bread and soup. The sighted teachers resented the new code with its implied demand that they learn something so alien. Worried for their own jobs, they complained that the sound of punching was disrupting classes. The school had finally achieved some financial stability with a government stipend from the Ministry of the Interior, but in 1826 the school bookkeeper fled after embezzling an amount equal to one half the annual budget.
Pignier appealed to the Ministry repeatedly over the next several years for repair or replacement of the deteriorating building. His requests were usually ignored, though medical inspectors visited the school in both 1821 and 1828 and reported dutifully and ineffectually that "mortality among the students is high."
Pignier arranged for Louis to become an organ student at a local church. The tradition of excellent musical training at the school has produced many first-rate professional organists, right down to our own day. By Louis's time over fifty graduates were playing in churches around Paris. Louis proved an exceptionally talented musician, was heard (and praised) by Felix Mendelssohn, and a few years later obtained the first of several jobs as a church organist.
Pignier created still another opportunity for Louis, appointing him the first blind apprentice teacher at the school. Louis taught algebra, grammar, music, and geography. Despite his busy schedule he kept tinkering with the code. By 1828 he had found a way to copy music in his new code and eliminated the dashes.
In 1829 at age twenty he published Method of Writing Words, Music, and Plain Songs by Means of Dots, for Use by the Blind and Arranged for Them, his first complete book about his new system. A few years later he, Gabriel Gauthier, and another blind friend and former pupil, Hippolyte Coltat, became the first blind full professors at the school. This meant they could leave the school occasionally without asking permission, got their own rooms, and had gold braid added to their uniforms as a mark of rank. All three new teachers used the new alphabet in their classes.
The same year Louis Braille was drafted and was represented at the recruiting board by his father. A census record of this encounter shows that Louis was exempt from the French army because he was blind, as a result of which he "could not read or write," an ironic footnote for someone who had largely solved one of the great problems of literacy before he was out of his teens.
Spending so much of his life in the unhealthy school building and living on a poor diet caused Louis to develop tuberculosis in his midtwenties. The diagnosis probably did not surprise him. For years his fellow students had become ill in such numbers that a visitor complained that the students could barely stand for long in a straight line for all the coughing and wheezing.
For the rest of his life Louis had periods of health and energy interspersed with terrifying hemorrhages and near-fatal collapses. Still, despite his illness, teaching load, and several jobs playing the organ, he worked on refining the code. Although French does not use a "W," Louis added it later at the request of an English student, the blind son of Sir George Hayter, portraitist to the British royal family. He worked hard on the Braille music code as well, probably spurred not only by his own musical abilities but by those of his friends. Gabriel Gauthier was a composer as well as an organist, who would eventually produce his own work among the first volumes of Braille music.
Louis was a popular teacher, generous to his students with both time and money. He made many personal gifts and loans from his small salary to help them buy warm clothes and better food. He also saved enough to buy himself a piano so he could practice whenever he wished. Because students typically had no way of writing home to their families without dictating a letter to a sighted teacher, Louis invented "raphigraphy," a system which represents the alphabet with large print letters composed of Braille dots. Raphigraphy was labor-intensive--the letter "I" alone required the Braillist to punch sixteen dots.
A blind inventor, Pierre Foucault, had been a student at the school back in the Quinze-Vingts days. He returned in 1841 and, when he saw what Louis Braille was doing, invented a machine called a "piston board" to punch complete dot-drawn letters. In 1847 he would invent the "keyboard printer" (essentially, a typewriter) enabling blind people to write to sighted people in black type. Louis Braille used it to compose letters to his mother back in Coupvray.
The first working print typewriter had actually been devised in 1808 in Italy to help a blind countess produce legible writing for sighted people, but print typewriters were not produced on any scale until the 1870's. In the meantime the piston board (although expensive) itself became a common device throughout Europe.
In 1834 Pignier arranged for Louis to demonstrate his code at the Paris Exposition of Industry, attended by visitors from all over the world. King Louis-Philippe of France presided over the opening of the show and even spoke with Louis about his invention but, like other observers, including officials from the Ministry of the Interior that supervised the school, did not seem to understand what he had seen.
Louis revised the book on his alphabet in 1837, the same year the students at the school published the first Braille textbook in the world, a three-volume history of France. The school print shop was directed by Alexandre Fournier, the student Valentin Haüy had brought along on his flight from France over thirty years before.
Blind students must have found it electrifying to be able to write and read for the first time with speed and accuracy equaling or exceeding that of many sighted people, and it must have been thrilling to observe. The full extent of this triumph completely eluded authorities of the time, however. Neither Louis's book nor the students' new history of France in Braille was the most heralded publishing project at the school in the year 1837.
Assistant director P. Armand Dufau, a former geography teacher at the school, published The Blind: Considerations on Their Physical, Moral, and Intellectual State, with a Complete Description of the Means Suitable to Improve Their Lot Using Instruction and Work. Dufau's book won the prestigious prize from the Académie Française which the year before had been awarded to Alexis de Tocqueville for his well-known book on America. Dufau, a staunch Braille opponent, who believed the code made the blind "too independent," included no mention of Louis Braille's innovation in his book.
The prize from the Académie meant Dufau found his own fortunes sharply on the rise, and he may have used some of his new influence to get a better building for the school at last. In 1838 poet and historian Alphonse de Lamartine toured the school and was horrified by the squalor. He made a powerful appeal to France's Chamber of Deputies for a new building, declaring, "No description could give you a true idea of this building, which is small, dirty, and gloomy; of those passages partitioned off to form boxes dignified by the name of workshops or classrooms; of those many tortuous, worm-eaten staircases...If this whole assembly was to rise now and go en masse to this place, the vote for this bill would be unanimous!" Plans finally commenced for a new school building across town.
Louis's deteriorating health forced him to turn down a job in a mountain locale that might have lengthened his life had he had the stamina to make the journey--tutor to a blind prince of the Austrian royal family. At last he took a long leave of absence to regain strength in Coupvray. Meanwhile Dufau engaged in intrigue with officials at the Ministry of the Interior and forced Pignier from his position.
When Louis returned to the school, he found more bad news. Dufau, now director, was making more changes, among them deleting "frivolous" subjects like history, Latin, and geometry from the curriculum. Dufau had sufficient official support to obtain a large budget increase for the school and decided to revolutionize the school's standard reading medium--not using Braille's code but adopting a British system invented by John Alston of the Asylum for the Blind in Glasgow. Another print-like tactile system, Alston type differed from Haüy type in that it used very simplified letter forms without swirls or serifs, similar to the modern Orator typewriter font. Alston had printed an entire Bible (in nineteen volumes) using this new system a few years before, and Dufau was greatly impressed with it.
To enforce the new system, Dufau burned many of the embossed books created by Haüy's original process and every book he found printed or hand transcribed in Louis's new code--the school's entire library and the product of nearly fifty years' work. To make sure no Braille would ever again be used at the school, he also confiscated the slates, styli, and other Braille-writing equipment.
Outraged, the students rebelled. Behind Dufau's back they wrote Braille even without slates. They sent messages and kept secret diaries written with knitting needles, forks, and nails. Dufau's punishments for Braille use, which included being slapped and starved, were completely ineffective. The older students taught the younger ones the system in secret. Braille, once learned, proved impossible to suppress.
Finally Dufau's shrewd assistant Joseph Guadet, who had been watching the students, became an ardent Braille supporter, teaching himself to read and write the code. He must have persuaded Dufau that, if powerful people in government heard that the students were unified in willfully defying Dufau's authority, his job might be at risk. If, however, a student invented something successful, the school would share the credit, which could only enhance the reputation of its director.
So, when the school moved into its new building in November 1843, P. Armand Dufau was a changed man, supplying every student with a new Braille slate. Euphoric at having defeated the Braille ban, students got up a petition and sent it to the government nominating Louis Braille for the French Legion of Honor for making true communication possible for the blind. The petition, however, was ignored.
Louis's public triumph would finally come at the new building's dedication ceremony the following February. Dufau glowingly described Braille's system of writing with raised dots, even having students give a demonstration. An official in the audience cried out that it was all a trick, that the child writing Braille and a second child (who had been out of the room for the dictation) reading it back must have memorized the text in advance. In reply Dufau asked the man to find some printed material in his pocket, which turned out to be a theater ticket, and to read it to the student Braillist. The little girl reproduced the text, and another child read it back flawlessly before the man even returned to his seat. The crowd, convinced, applauded wildly for a full six minutes.
Louis Braille spent the last eight years of his life teaching occasionally and Brailling books for the school library as he battled declining health. People were starting to call the dot system by his name, "Braille," and a growing number of inquiries about it were reaching the school from all over the world. When Dufau published the second edition of his influential book in 1850, he devoted several enthusiastic pages to the Braille system. Still, when Louis Braille died on January 6, 1852, just two days past his forty-third birthday, not a single Paris newspaper noted his passing.
His system survived, and in 1854 France adopted Braille as its official communications system for blind people. At the school Braille's friends and former students energetically evolved new ways of working with the code. Victor Ballu experimented with a phonetic shorthand system and, in concert with Levitte, used two-sided stereotyping as early as 1867. In 1880 Levitte published a guide to the code using the same numbering system for the position of the six dots (calling the letter "a" dot 1 and so forth) that we still use today. By the late 1880's Ballu had devised a true interpointing scheme for printing two-sided pages.
Levitte went on to become a beloved superintendent at the school but unfortunately died suddenly in 1883. A student at the time, Louis Vierne, later a famous organist, reflected bitterly that the system for choosing directors was still erratic, writing that Levitte's successor was, "a vain and stupid brute who understood utterly nothing of his proper role; he treated us like prisoners, and used to boast of how much he despised us."
The Braille system spread to Switzerland soon after but encountered tremendous resistance in other countries, and often for the same reason: Braille's seeming opacity to the sighted because of its lack of resemblance to print. The fact that the blind might want to write because they had something to say, as well as read what others have written, incredibly seems never to have occurred to many of these educators. The writing factor--Braille is easy to write manually, while raised print letter forms are nearly impossible--was a huge factor in securing Braille's lasting place in its users' hearts.
A later Braille reader, Helen Keller, wrote: "Braille has been a most precious aid to me in many ways. It made my going to college possible--it was the only method by which I could take notes of lectures. All my examination papers were copied for me in this system. I use Braille as a spider uses its web--to catch thoughts that flit across my mind for speeches, messages, and manuscripts." If Louis Braille had ever had the time to write his own thoughts on solving problems, dealing with hardship, and persevering through setbacks, few would deny that would have been a story well worth reading, regardless of what medium originally held the words.
Curiously, many educators of the blind seem to have made a highly personal mission out of devising conflicting codes with little regard for their practical implications. Ferocious, competitive partisanship developed over these code systems, usually with no input from potential readers. The United Kingdom seems to have been the one bright exception. Thomas Rhodes Armitage, a wealthy physician who struggled with vision problems himself, convened a committee of other blind people "with knowledge of at least three systems of embossed type and having no financial interest in any" to evaluate the various codes and make a decision on which one would be best for Britain. During the two years the committee deliberated, they surveyed dozens of blind readers. Two years later, in 1870, Braille won, though it was many years more before it was fully implemented.
While many of the competing codes did not thrive much past the end of the nineteenth century, the innovators they attracted often did move Braille publishing forward in unexpected ways. William Bell Wait, superintendent of the New York Institute for the Blind, energetically promoted a now almost forgotten code called "New York Point" in 1868. New York Point was a cell two dots high with a varying cell width and was used for years in book and magazine production.
Though New York Point was eventually eclipsed by Braille, Wait more lastingly gave an eloquent argument in the Senate Education Committee that helped secure the first annual grant from Congress for embossed books for the blind in 1879, thus securing an important financial channel for publishing for the blind in the United States.
The first American institution to adopt Braille was, ironically, the Missouri School for the Blind, located in St. Louis--a city named for Louis IX, Crusader king of France. Dr. Simon Pollak, a member of the school's board, had earlier traveled to France and was much impressed with the Braille system. By some unknown means students at the school learned Braille independently and taught it to each other after school hours, using it to pass notes to confound their sighted teachers. Initially the superintendent of the Missouri school resisted the use of Braille, saying it was "not pleasing to the eye," but his opposition did not stand. The school adopted Braille officially in 1860.
The Quinze-Vingts still exists today, now a high-tech ophthalmologic hospital as well as a residence for the blind. The wooden stalls and benches used for St. Ovid's Fair were destroyed in a fire in 1777. By 1793 the only spectacle on the site was the guillotine. Over 1,000 executions took place there, including those of King Louis XVI and Queen Marie Antoinette.
Valentin Haüy is one of the great humanitarians (joining, among others, Abraham Lincoln, St. Francis of Assisi, and Florence Nightingale) immortalized in the stone carvings adorning New York City's Riverside Church. His life and work are also remembered in a museum on Rue Duroc in modern Paris, open Tuesday and Wednesday from 2:30 to 5:00 p.m., closed from July 1 to September 15 annually. Admission is free.
François Lesueur, the beggar who was Haüy's original student, became the printer at the school, a teacher, and later the treasurer. The former St. Firmin's seminary on Rue Saint-Victor served as an army barracks and a warehouse before it was finally torn down in the 1930's. The last building Louis Braille would have known and where he died, on the Rue des Invalides, is still the location of the school for the blind today.
Joseph Guadet, one of the first sighted people to learn Braille, would found, edit, and publish a journal entitled Teacher of the Blind and would write several books, including a history of the school. His primary mission, however, was always the promotion of Louis Braille's system. He famously declared that Braille himself was "far too modest to insist on the rightful place for his code in the life of the blind. We had to do it for him!"
Guadet's history was not the earliest one written about the school. A student named Galliod in 1828 wrote Notice historique sur l'établissement des jeune aveugles (Paris: Imprimé aux Quinze-Vingts). One cardboard-bound copy exists in original Haüy type at the Association Valentin Haüy in Paris.
Louis Braille was also not the only ground-breaking alumnus of the school's early days. In 1830 Claude Montal taught himself the craft of tuning on an old piano while a student at the school and eventually started a highly successful program to teach this lucrative skill to other students. By 1834 he had published "How to Tune Your Piano Yourself" and went on to open his own shop. The school has also produced an unprecedented stream of world-famous organists that continues to our own time, including Louis Vierne, André Marchal, and Jean Langlais. Among the present organists at Notre-Dame Cathedral is Jean-Pierre Leguay, who is also blind.
Louis Braille's will, dictated to a notary less than a week before his death, included bequests, not only to his family, but to the servant who cleaned his room, the infirmary aide, his sighted guide, and the night watchman at the school. His clothes and personal belongings went to his students as mementos. He made one odd request, instructing friends to burn a small box in his room without opening it. After his death, they were unable to resist a peek and found the box stuffed with IOUs in Braille from students who had borrowed money from their generous teacher. The notes were finally burned in keeping with his wishes.
Upon Louis Braille's death, Hippolyte Coltat served as his executor, inherited his piano, and worked hard to advance his legacy. His warm recollections of his teacher and friend at a memorial service at the school served as Braille's first biography. Gabriel Gauthier outlived Louis by only a short time. He also died of tuberculosis.
Louis Braille's writing system eventually spread throughout the world and of course became known by his name. Curiously, considering that Louis's father was a harness and saddle maker, there is an English word, “brail”, which describes a rope used in sailing and is derived from a fifteenth-century French word “braie” meaning "strap." Thus, it seems reasonable to speculate that the family name may have been derived from an ancestor's similar occupation.
The Braille home in Coupvray, a short distance from EuroDisney, has become a museum. Louis Braille was originally buried in a simple grave in the small cemetery in his hometown. In 1952, on the one-hundredth anniversary of his death, public feeling grew that his remains should be moved to the Pantheon in Paris, where France's national heroes are buried. The mayor of Coupvray protested that Louis Braille was a true child of the area and that some of him should remain in his home village. His hands were separated from his arms and re-buried in Coupvray.
The rest of his body was interred in the Pantheon following a huge public ceremony attended by dignitaries from all over the world, including Helen Keller, who gave a speech in what the New York Times reported as "faultlessly grammatical" French. She declared, to a rousing ovation from the hundreds of other Braille readers in attendance, that "we, the blind, are as indebted to Louis Braille as mankind is to Gutenberg."
As the coffin was borne through the streets of Paris towards the Pantheon, hundreds of white canes tapped along behind in what the Times, its own fortunes founded in literacy and publishing, called (with no apparent hint of irony) a "strange, heroic procession." The Pantheon is in the Paris's fifth arrondissement, only a few blocks from the old school for the blind.
Despite the fact that the Braille dots do not resemble print letters (a complaint still heard today), Braille has been adapted to nearly every language on earth and remains the major medium of literacy for blind people everywhere. Debunking the myth that Braille is somehow too difficult for the sighted to learn, sighted transcribers have long been a primary source of textbooks for blind students. Thousands of these volunteers learned Braille as an avocation and churned out books one cell at a time from kitchen tables and bedroom offices everywhere for many years with little fanfare. Their efforts in the United States have, if anything, expanded over the last decade with the coming of the computer age and the mainstreaming of blind students in public schools.
Whether through software translators or direct entry, Braille turned out to be extraordinarily well suited to computer-assisted production due to its elegance and efficiency. Braille displays for navigating and reading computer text in real time have become increasingly affordable and reliable as well. The computer age created an unprecedented and continuing explosion in the amount of Braille published and read in nearly every country throughout the world.
[Miss Garvine: Do this section with flush left, next line hanging indent.]
Adler, David. A Picture Book of Louis Braille. New York: Holiday House, 1997 (Print) For young children. Available from National Braille Press <http://www.nbp.org> in print/Braille format.
Benedek, Thomas G., "Gonorrhea and the Beginnings of Clinical Research Ethics," Perspectives in Biology and Medicine 48.1 (2005) 54-73.
Bernard Becker Collection in Ophthalmology catalog, Washington University School of Medicine Library, St. Louis, Missouri. <http://beckerweb.wustl.edu>
Bickel, Lennard. Triumph Over Darkness: The Life of Louis Braille. Sydney: Allen & Unwin, 1988. (Large print) Adult biography.
Burbeck, James. "Napoleonic Artillery: Firepower Comes of Age," War Times Journal. <http://www.wtj.com/articles/napart/>
"A Century of Braille," New York Times, 23 June 1952: 18.
City of St. Louis, Missouri. St. Louis City History. <http://stlouis.missouri.org/heritage/History69/>
Davidson, Margaret. Louis Braille: The Boy Who Invented Books for the Blind. New York: Scholastic, Inc., 1971. (Print)
Duxbury Systems. Louis Braille. Short biography, plus an excellent introduction to the Braille system's affinity with computers.<http://www.duxburysystems.com/braille.asp>
Farrell, Gabriel. The Story of Blindness, Cambridge: Harvard University Press, 1956. (Print)
Franks, Julie. "Historical and Current Perspectives: Review of Literature," Thesis extract, University of Central England and Royal National Institute for the Blind School of Rehabilitation Studies, 2005. On the Internet at <http://www.sightlossmatters.com/>
Freedman, Russell. Out of Darkness: The Story of Louis Braille. New York: Clarion Books, 1997. (Print)
Fundación Braille del Uruguay (Biography, Spanish text) Photos of the Braille home today, the workbench where the fateful accident occurred, and Louis himself, who was an early subject of photography. <http://fbraille.com.uy/louisb/>
Green, Gill. "History of Piano Tuning," Association of Blind Piano Tuners, United Kingdom Piano Page. <http://www.uk-piano.org/history/piano-tuner-history.html>
Halsell, Paul. "The Crusades: Selected Sources," Internet Medieval Sourcebook, Fordham University. <http://www.fordham.edu/halsall/sbook1k.html>
Haüy, Valentin. An Essay on the Education of the Blind, Callahan Museum, American Printing House for the Blind, translated by Thomas Blacklock. Edinburgh: A. Chapman and Co., 1793. <http://sun1.aph.org/museum/huaymain.html>
"Helen Keller Pays Tribute to Braille," New York Times, 22 June 1952: 20.
Heller, Robert. "Educating the Blind in the Age of Enlightenment: Growing Points of a Social Service," Medical History 23 (1979): 392-403.
Hernandez, John. "History of Reading Codes for the Blind," New York Institute for Special Education. <http://www.nyise.org/blind/barbier2.htm>
Jernigan, Kenneth, "A Visit to Louis Braille's Birthplace," and "Facts about Louis Braille's Birthplace," Braille Monitor Volume 37, No. 7, July, 1994. <http://www.nfb.org/bm/bm94/brlm9407.htm>
Keller, Helen. "Braille, the Magic Wand of the Blind," Correspondence and Writings on Education, American Foundation for the Blind. <http://www.afb.org/Section.asp?SectionID=1&TopicID=193&SubTopicID=11&DocumentID=1187>
Kiefer, James. "Louis IX, King of France," Christian Biographies, Rowan University. <http://elvis.rowan.edu/~kilroy/JEK/08/25.html>
Lantier, Patricia and Beverley Birch. Louis Braille. Milwaukee: Gareth Stevens Children's Books, 1991. (Print) For late elementary and middle-school readers.
Les associés du site web Louis Vierne, Louis Vierne Website. <http://www.netreach.net/~druid/Louis_Vierne.html>
"Les Spectacles de la foire d'Emile Campardon" Volume 1, 1877. Ed. Barry Russell. Calendrier électronique des spectacles sous l’ancien régime et sous la révolution (CESAR) <http://ah2.brookes.ac.uk/anahide/cesar2/books/campardon/view.php?volume=1&index=187>
Lorimer, Pamela. "A Critical Evaluation of the Historical Development of the Tactile Modes of Reading and an Analysis and Evaluation of Researches Carried Out in Endeavors to Make the Braille Code Easier to Read and Write," Doctoral thesis, University of Birmingham, 1996. On the Internet at <http://www.braille.org>
Merriam-Webster Online <http://www.m-w.com> Online dictionary from Merriam-Webster. Enter "brail" to read the derivation.
Missouri School for the Blind History Page. <http://www.msb.k12.mo.us/msb_history.html>
Neimark, Anne E. Touch of Light: The Story of Louis Braille. New York: Harcourt, Brace & World, 1970. (Print)
The Paris Pages. <http://www.paris.org/>
Plain-Japy, Frédéric. "Origins and Genesis of Braille in the World," 62nd International Federation of Library Associations and Institutions General Conference, 1996. (Speech in French)<http://www.ifla.org.sg/IV/ifla62/62-plaf.htm>
Polt, Richard. Classic Typewriter Page. <http://staff.xu.edu/~polt/typewriters/tw-history.html>
Retarides, James. The Riverside Church. <http://www.fordham.edu/halsall/medny/retarides.html>
Robb, Graham. Victor Hugo: A Biography. New York: W.W. Norton & Company, 1997. (Print)
Roblin, Jean. The Reading Fingers: The Life of Louis Braille. Trans. Ruth G. Mandalian. New York: American Foundation for the Blind, 1955, and Edmonds, Washington: Louis Braille Center, 1993. Available in print and Braille versions. <http://www.louisbraillecenter.org>
Royal National Institute for the Blind Publications Page. <http://www.rnib.org/xpedio/groups/public/documents/code/public_rnib003467.hcsp>
Schama, Simon. Citizens: A Chronicle of the French Revolution. New York: Alfred A. Knopf, 1989. (Print)
Wagg, Henry J., assisted by Mary G. Thomas. (1932) A Chronological Summary of Work Done for the Blind from the Earliest Records up to the Year 1930. London: National Institute for the Blind, 1932. Online book at the Royal National Institute for the Blind's Publications Archive. <http://www.rnib.org.uk/xpedio/groups/public/documents/visugate/public_surwrkbl.hcs>
Weiner, Dora B. The Citizen-Patient in Revolutionary and Imperial Paris. Baltimore and London: John Hopkins University Press, 1993. (Print)
Wheatley, Edward, "Blindness, Discipline, and Reward: Louis IX and the Foundation of the Hospice des Quinze Vingts," Disability Studies Quarterly 22.4 (2002): 194-212.
[PHOTO/CAPTION: Barbara Loos
A Boa in My Brailler
by Barbara Loos
From the Editor: Barbara Loos is a leader of the NFB of Nebraska and a frequent contributor to these pages. The following story is one she promised to sit down and tell someday, and here it is:
A few days before my sophomore year of college officially began, my mother, sister, and I went to see which room I would occupy in Selleck Quadrangle and which one my sister, a year ahead of me, would have in another dorm on the University of Nebraska--Lincoln campus. I had that butterfly feeling familiar since childhood when wondering who my roommate would be at the school for the blind in Nebraska City. One thing was different now though. Then, although I didn't know specifically with whom I would share a room, I knew all the girls in question. Now I would be meeting someone new. The roommate I had had as a freshman had been a senior who had graduated at the end of the year. I was happy for her but sad for me. She and I had become friends. We still usually catch up by letter at Christmastime.
As we entered the room I would soon call mine, my butterflies were soon replaced by intrigue. Just inside the door my mother stopped dead in her tracks.
"Well, I guess we know which desk will be yours," she announced in a tone of both disbelief and disgust.
"Why?" I asked.
"Because this," she said, placing my hand on something, "is on the other one."
"How strange," I said, mystified. "I wonder why someone would have a skull."
Then there was the peculiar wooden box with a light bulb in it. What on earth was that?
The right-hand end of the closet bar was sparsely hung with work shirts. There were no other outward signs of occupation. Whoever this person was, I was now looking forward to meeting her.
When we came back later to move my things in, she was there. Her name was Diane. The skull was a gift from a friend. The box with the light was for Otis, her pet boa constrictor. He had his own light bulb because temperatures below eighty degrees or so would make him lethargic. Although she had assured us that Otis had no way of escaping, my mother emphatically decreed, after Diane left, that she refused to read to me in that room.
For my part I enjoyed getting to know Otis. He liked to wrap around my arm and lean toward lights or slither from one of my legs to the other when I was seated. It was fun sometimes to carry him around and let him reach for things.
Only one time was our relationship anything other than amicable. Diane was cleaning his home while I sat on my bed, enjoying Otis as he lounged companionably in my lap. Suddenly I noticed that he was moving purposefully to my left. As I slid my fingers gently along his body, I discovered his mission in progress. His head and upper body were already inside my Brailler--a machine more or less like a typewriter, except that it has only six keys for creating the dots that form letters, numbers, and other symbols; a spacebar; a carriage-return lever; and both backspace and line-advance keys. Otis had entered by climbing over the keys and through the space along which the carriage moves. He had begun to intertwine himself in the inner mechanisms in such a way that pulling him out didn't seem possible. I tried that anyway, having no other ideas. His response was a firmer grip on something in there and a resistance in his muscles that was both fascinating and unnerving.
Diane, a pretty unflappable soul, suggested that we let him come out when he decided to. When I asked how long that might take, she said that when he had gone into her skull, he had stayed only two weeks. Two weeks! I had homework to do that very night for which I needed to use the machine. I was horrified.
After telling her that this would never do, I started weighing options. Turning the Brailler this way and that, I hoped to inspire Otis to come out and look for more suitable quarters. Instead he pulled more of himself inside. So by the time Diane reached her friend, Tim, who had graduated from boa constrictors as pets to pythons, his suggestion of pulling him out backward was absolutely out of the question. Not only was I concerned about tearing his skin, but I was also having a hard time coming up with an explanation to a repairperson of just how some of the internal workings of the Brailler had become bent, should that occur. I didn't think anyone would buy, "My roommate's snake did it."
Only one genuinely rational option occurred to me. We needed to take the Brailler apart. Removing the bottom was easy. It is made of something akin to Masonite and is held in place by eleven small screws. Since from time to time other objects had found their way into the cavity now occupied by Otis, I had a Phillips head screwdriver in my desk drawer just right for the job. Removing the base had an effect on Otis similar to moving the machine around, so it was still impossible simply to pull Otis out. Since the rest of the machine is held together by screws of various sizes, my single screwdriver was insufficient.
Fortunately, just down the hall lived my friend Judy. She generally had or could find both the tools and the ingenuity to deal with almost anything. Today she makes her living as a geneticist. That night I sought her out mostly for her tools, although I was hoping for a dose of ingenuity as well. She was initially a bit dubious about the project. Ultimately, though, the thing was just too funny for her to pass up. We soon had both Otis and my Brailler restored to their proper stations, injury-free.
Although thirty-five years have passed since this event, I have never tired of telling the tale. I think that's because, during the course of that school year, Otis managed to snake his way into my heart as well as my Brailler.
[GRAPHIC/CAPTION: The Maxi-Aids logo]
[GRAPHICS/CAPTION: The Independent Living Aids logo]
Round Two in Reporting the Maxi-Aids Contempt of Court Case
by Barbara Pierce
Two months ago, in the May issue of the Braille Monitor, we reported that Maxi-Aids, Elliot Zaretsky, and his son Harold had been held in contempt of court by the Honorable Arthur D. Spatt of the United States District Court for the Eastern District of New York. The contempt finding resulted from the fact that Maxi-Aids had plastered the Internet and also its own Web sites with listings that suggested that it was somehow related to or affiliated with Independent Living Aids, a competitor company. We return to the subject this month, partly to address inquiries from a number of readers, and also to report on a new development that should make skeptics and non-skeptics alike think long and hard about Maxi-Aids’ business ethics and practices.
With respect to the first issue, a number of readers have raised questions about a sentence in the third paragraph of the May article, in which we reported that a charge of witness tampering had been made by Marvin Sandler, the president of Independent Living Aids (ILA), against Elliot Zaretsky, the driving force behind Maxi-Aids. Some people have raised questions about the harshness of the accusation of witness tampering and wondered about its accuracy. So here are the facts; you can decide for yourself.
Sandler’s charge was a reaction to a dramatic change in testimony by Vladimir Ereshkin, Maxi-Aids’ computer expert, who prepared and maintained the Maxi-Aids’ Web sites and Internet advertising. One of the issues being argued in the contempt case involved whether or not Maxi-Aids was required to notify search engines such as Google, AltaVista, and Yahoo to remove the phrase “Independent Living Aids” from their listings in order to undo the damage they had done by posting listings with the names of the two companies linked together. ILA contended that the obligation existed, whereas Maxi-Aids claimed that it did not have to notify the search engines and that all it had to do was change the listings on its own Web sites (more or less letting nature take its course as the search engines periodically updated themselves).
Here is an excerpt from an affidavit submitted to the court on July 23, 2003, by Marvin Sandler in which he quotes from the transcript of a hearing held before Magistrate Judge Arlene Lindsay, who was conducting hearings on behalf of Judge Spatt:
The testimony given by Mr. Ereshkin at the hearing of November 18, 2002, also shows that his employer, Elliot Zaretsky, was again up to his old tricks and defying the orders of the court–except that this time it was Magistrate Judge Lindsay’s court. On page 84, beginning at line 5, Mr. Dweck asked, “Did Mr. Zaretsky tell you at any time to notify the search engines to discontinue the use of the name and phrase ‘Independent Living Aids’ in connection with any Maxi-Aids listing? Just yes or no, sir.”
On line 9 Mr. Ereshkin answered, “He asked me to. I didn’t know how to.”
This was followed on page 103, line 7:
MR. DWECK: Did Mr. Elliot Zaretsky tell you to notify or attempt to notify the search engines to remove the name and phrase ‘Independent Living Aids’ from their listing on the Internet?
MR. SOLOMON: Objection.
THE COURT: Asked and answered. Sustained.
MR. DWECK: Did anybody else from Maxi-Aids tell you to notify the search engine, besides Elliot Zaretsky, to remove the name ‘Independent Living Aids’ from any listing on that search engine about Maxi-Aids?
MR. SOLOMON: Objection.
THE COURT: Maybe I misheard the testimony, but I thought he was instructed to do this. Did Mr. Zaretsky tell you to check that out?
THE WITNESS: Well, he asked me if it’s possible to do it. As I said before, I didn’t know a reasonable way to do it.
[We interrupt to note that, since the defendants claimed that they were not required by the court to notify the search engines, Mr. Ereshkin’s testimony was harmful to the Maxi-Aids case because Elliot Zaretsky would not have instructed Ereshkin to notify the search engines if he had not believed he was required to do so. But back to Sandler’s affidavit.]
At this point a break for lunch was taken, and the defendants were instructed not to talk to Mr. Ereshkin, at the request of Mr. Dweck and under the order of Magistrate Judge Lindsay. After the lunch break questioning resumed, and on page 126, beginning at line 24, Mr. Dweck asked, “Did Elliot Zaretsky tell you to remove the name and phrase ‘Independent Living Aids’ from the search engines when he told you to remove it from the Web site of Maxi-Aids?”
Mr. Ereshkin replied, “No, he didn’t tell me.”
It is abundantly clear that someone spoke to Mr. Ereshkin during the lunch break in a blatant violation of Magistrate Judge Lindsay’s order. Your deponent believes that Mr. Solomon, whom I respect both as an accomplished lawyer and as a gentleman, would not have attempted to influence Mr. Ereshkin in an effort to have him change his testimony. Your deponent does believe that, given Mr. Zaretsky’s past history and testimony at trial in 1997, he would not, as Mr. Ereshkin’s employer, be above trying to influence Mr. Ereshkin to change his testimony to make it more advantageous to the defendant’s case. If my belief is correct, it shows once again the contempt and disregard that Mr. Zaretsky has for this court and the orders and directives given to him. Your deponent recognizes that this is a serious charge. However, there is a documented precedent that clearly shows that Elliot Zaretsky is not above witness tampering. During the discovery phase of the original lawsuit, a deposition was taken of Mr. Zaretsky’s daughter, Pamela Zaretsky Stein, who, it had been claimed, was the majority stockholder of Maxi-Aids at a time when bids were submitted to the Veterans Administration.
[We interrupt again to point out that later testimony disclosed that neither Mrs. Zaretsky Stein nor any other woman owned a single share of stock at the time the bids were submitted, even though the bids claimed that Maxi-Aids was a woman-owned company.]
Contrary to common procedure, Mr. Zaretsky insisted on being seated on the plaintiff’s side of the table, opposite Mrs. Stein, because he claimed that he “wanted to gaze on his daughter’s lovely face.” It became quickly noticeable to your deponent that Mr. Zaretsky was signaling answers to his daughter, using sign language. The Zaretskys are conversant with sign language because Harold Zaretsky is deaf and has been trained in this method of communication. When he was caught, Mr. Zaretsky vigorously denied that he had been signaling answers to his daughter. However, he faced a problem–your deponent has taken courses in sign language at the Helen Keller National Center and was able to verbally describe the answers that Mr. Zaretsky was signaling to his daughter. He was required to return to the defendant’s side of the table and to keep his hands out of sight, below the level of the table.
There you have Marvin Sandler’s charge of witness tampering against Elliot Zaretsky. In response, Michael Solomon, the attorney representing Maxi-Aids and the Zaretskys, submitted a reply stating that Sandler’s affidavit was part of a personal vendetta against his clients and asked that the court not read the affidavit. Since the issue of notifying the search engines became moot, because it was not specified in the written court order, we don’t know whether the court ever considered Sandler’s charge, and it is now nothing more than another episode in the history of the litigation that has gone on for the past ten years between ILA and Maxi-Aids. The editorial staff of the Braille Monitor makes no comment on Sandler’s charge, other than to say that it does seem clear that Elliot Zaretsky did try to influence the testimony of his daughter in 1997, since he was caught red-handed and witnesses were in the room. With regard to the change in Mr. Ereshkin’s testimony, we’ve responded to our readers’ requests, printed Sandler’s statement, and now leave readers to make up their own minds.
However, a new and clear-cut element has been injected into the saga that leaves no room for disagreement regarding Maxi-Aids’ behavior and ethics. A message with a subject title “we blind make Internet law” was recently posted on a chat room site called “[email protected]” by a lawyer whose email address indicates that he works in the office of the attorney general of the State of New York. In his message he mentioned and reprinted a decision of the Second Circuit Court of Appeals involving Maxi-Aids and ILA. For those who would like to go straight to the source, the Second Circuit has a Web site <www.ca2.uscourts.gov>. In the section labeled “Decisions” enter “Search All” and then enter “Docket Number 04-2252” to bring up the complete decision of the court.
The decision of the Second Circuit Court of Appeals came about because of an appeal filed by Maxi-Aids in order to avoid or lessen the impact of the contempt case. In the appeal Maxi-Aids claimed that the words “Independent Living Aids” constituted a generic phrase and that ILA could not and should not be afforded trademark protection. A panel of three judges heard the appeal and determined that ILA did indeed have a right to trademark protection, at least in the blind industry. However, in a footnote the court stated that everything that had been presented to them contained the words with initial capitalization, so their decision covered only “Independent Living Aids” but not “independent living aids.” The court also suggested that ILA had the right to go back to Judge Spatt to request that his injunction be amended to cover lower-case usage as well and even cited the section of the law under which the request could be made. Following the suggestion of the Second Circuit, ILA filed a motion with Judge Spatt, who did indeed expand the injunction. This resulted in a second appeal by Maxi-Aids, which was presented to a different panel of three judges from the Second Circuit, and their unanimous decision of April 4, 2005, was in effect a resounding condemnation of Maxi-Aids’ business practices. The decision specifically referred to Maxi-Aids’ “calculated” and “intentional” efforts to deceive the consuming public, and left no doubt as to the court’s opinion of Maxi-Aids’ business conduct. Part of the decision referred to “bad faith,” and this, as well as the use of the words “calculated” and “intentional” in describing Maxi-Aids’ behavior, left the door open for ILA to file for recovery of legal fees expended in defending against the Maxi-Aids appeal. ILA immediately filed a motion for reimbursement of legal fees, which is still pending. The motion was accompanied by an affidavit from ILA’s lawyer, Jack Dweck, from which we reprint two paragraphs containing a summary of the Second Circuit’s decision and ILA’s claim for reimbursement of legal fees that were expended:
The summary order of the Second Circuit Court of Appeals is a powerful document, not only because of the unanimity of the judges, but also because of its ringing indictment of Maxi-Aids and its conduct. The third paragraph of page three refers to Maxi-Aids’ “calculated efforts to exploit the limitations of Internet search engines in order to misdirect and mislead consumers who used these vehicles in attempts to reach ILA.” The first paragraph of page four refers to “consumers who seek to buy products from ILA through the World Wide Web being misdirected to Maxi-Aids.” The Second Circuit then talks of “causing confusion or mistake as to the affiliation, connection, or association of Maxi-Aids and its products with ILA and its products.” The second paragraph of page four again talks of Maxi-Aids’ willful actions, and in one sentence speaks of “Maxi-Aid’s [sic] calculated use in Internet commerce of ‘independent living aids’” and in the very next sentence refers to “evidence of Maxi-Aid’s intentional efforts to cause confusion.” The second paragraph on page five reiterates the findings of both this court and the Second Circuit “of evidence presented to the district court documenting Maxi-Aid’s intentional efforts to cause consumer confusion.” Thus, in a six-page document, of which the first page was a title page, the word “calculated” appears twice, “intentional” appears twice, and “consumer” and “confusion” each appear three times.
The summary order of the Second Circuit Court of Appeals mirrors the unanimous jury verdict at the trial of ILA and Marvin Sandler v. Maxi-Aids et. al., which held that on all six counts Maxi-Aids and its principals had acted willfully. The jury also determined that the prime victims of the defendants were the consuming public, who in our industry are blind, visually impaired, or elderly people and who constitute the most vulnerable members of society. Thus, while finding that barring Maxi-Aids from using the phrase [independent living aids] “presses trademark law to its outer limits,” the Second Circuit clearly concluded that this was a necessary step in order to protect the consuming public from Maxi-Aids’ predatory practices. Your deponent respectfully suggests that the unanimous, strong, and unequivocal decision by the Second Circuit Court of Appeals and its condemnation of Maxi-Aids’ “calculated” and “intentional” activities merits reimbursement to the plaintiffs of counsel fees and out-of-pocket costs incurred in defending against the defendants’ challenge to this court’s Memorandum and Decision and Order dated February 21, 2004.
Having quoted from Jack Dweck’s affidavit, we also note that we have not seen Michael Solomon’s response to the affidavit nor his comments on the unanimous decision of the Second Circuit Court of Appeals. However, we’re confident that he will not characterize either of them as part of a vendetta against his clients. The Second Circuit Court of Appeals is often regarded as the second highest ranking court in the country, second only to the United States Supreme Court, and is sometimes affectionately referred to as the “Mother Court.” Its judges are widely respected, and judges in other courts often rely heavily on decisions of the Second Circuit.
Again we reiterate our thoughts and reactions to Maxi-Aids’ conduct in our industry. We’ve consulted friends in the legal profession, and none recalls ever reading a decision expressing such powerful condemnation of a litigant’s behavior. We join in the condemnation. We condemn the counterfeiting of Say When liquid level indicators, which resulted in blind workers’ losing their jobs; we condemn the diversion of Perkins Braillers, which resulted in thousands of blind kids in developing countries losing the opportunity of Braille literacy and the economic opportunities that go with it; we condemn the appropriation of the Say When name by registering it as Maxi-Aids’ own; and we condemn the “calculated” and “intentional” efforts of Maxi-Aids to confuse and mislead the consuming public.
We now ask every person of conscience to decide where he or she stands on these issues. You have read Judge Spatt’s words in the May issue of the Braille Monitor, and now you have read the withering words of a distinguished panel of three judges from one of the highest courts in the land. For those who feel that these issues do not affect them, we remind you of the words of the judges of the Second Circuit that Maxi-Aids made “calculated” and “intentional” efforts to confuse and mislead the consuming public. In case you have forgotten who the consuming public is in the blindness field, wake up, readers-it’s us!
You can create a gift annuity by transferring money or property to the National Federation of the Blind. In turn, the NFB contracts to pay income for life to you or your spouse or loved ones after your death. How much you and your heirs receive as income depends on the amount of the gift and your age when payments begin. You will receive a tax deduction for the full amount of your contribution, less the value of the income the NFB pays to you or your heirs.
You would be wise to consult an attorney or accountant when making such arrangements so that he or she can assist you to calculate current IRS regulations and the earning potential of your funds. The following example illustrates how a charitable gift annuity can work to your advantage.
Mary Jones, age sixty-five, decides to set up a charitable gift annuity by transferring $10,000 to the NFB. In return, the NFB agrees to pay Mary a lifetime annuity of $750 per year, of which $299 is tax-free. Mary is also allowed to claim a tax deduction of $4,044 in the year the NFB receives the $10,000 contribution.
For more information about charitable gift annuities, contact the National Federation of the Blind, Special Gifts, 1800 Johnson Street, Baltimore, Maryland 21230-4998, (410) 659-9314, fax (410) 685-5653.
[PHOTO/CAPTION: Angela Wolf]
Blind Student Focuses On Her Goal
To Become Elementary School Teacher
by Kay Randall
From the Editor: Angela Wolf has been a leader at one level or another of the Federation almost since she joined the organization as a young teen. Today she is president of the National Association of Blind Students and second vice president of the NFB of Texas. In her spare time she conducts a busy life as a graduate student and wife. The following article about Angela was the feature story on the University of Texas home page during the week of April 11 to 18, 2005.
If you think about all of the difficult tasks that would be intimidating if you were blind, what comes to mind?
Using a computer to type a paper for class or email friends? Navigating around a large, unfamiliar city? Cooking a flawless five-course meal for a dinner party? Selecting a perfect outfit at your favorite funky clothing store? Teaching a highly energetic class of eighteen second graders?
Chances are you would designate the first four items challenging and the last one downright impossible. Actually it’s not.
Angela Wolf, a student teacher in the University of Texas at Austin’s College of Education, is about to wrap up her final semester as an apprentice teacher, having spent the last three semesters teaching kindergartners and second graders. In May she will leave the university with a teacher’s certificate and, she hopes, a job teaching in an elementary school classroom all her own. A person who was blessed with that something extra, Angela is a leader and activist in the blind community on a national level and the type of individual others allude to in conversations about inspirational behavior or the indomitableness of the human spirit.
At age twelve Angela went from sighted to blind almost overnight when her doctor administered too high a dose of Vitamin A to her, triggering a rare condition known as pseudotumor cerebri. With pseudotumor cerebri--which literally means “false brain tumor”--the body leaps to the alert and reacts as though one has a brain tumor. It produces more fluid around the brain than can be absorbed, and this excess of fluid creates a great deal of pressure. In cases such as Angela’s, the pressure squeezes and destroys the optic nerves.
Although the condition normally strikes females between twenty and fifty and sometimes does not result in loss of vision--or causes loss of vision over an extended time--Angela recounts the story of her loss of sight with no sense of being misfortune’s victim.
“I recall thinking almost from the beginning that regardless of my blindness I could do whatever I wanted to do in life,” says Angela. “I remember telling my parents after I first went blind that I didn’t want to be different or treated like a weirdo. I was very, very lucky to have grown up in Shreveport, Louisiana, which is about sixty miles away from a wonderful private training center for the blind. My parents had me in a camp there a matter of months after I lost my sight, and the learning and adaptation began.
“We started out learning Braille and how to use a cane and gradually learned more complex tasks. It’s important that people realize blindness is not an impairment--it’s just an inconvenience. As it turns out, I’ve had several wonderful role models who were blind and were happy, independent people, achieving incredible things and having perfectly normal lives. I’ve never felt limited.”
To say Wolf has never been limited by her physical disability is a significant understatement. In addition to obtaining a degree in humanities from the University of Texas at Austin in 2002, she also has become an activist in the blind community and serves as president of the National Association of Blind Students. She is quoted in national newspapers on topics like better and quicker access for blind individuals to usable textbooks, directs arts programs for blind children, attends and speaks at conferences around the nation, and lobbies for reasonable access for all.
“I at first did not realize what a leader Angela is in the blind community and the impressive level of respect she commands,” says Malia Henson, a teacher of second grade at St. Elmo Elementary in Austin and Wolf’s cooperating teacher this semester. “She’s extraordinary, and just being around her makes you realize how much more you could do because she’s accomplishing things that people with sight won’t even try.”
Courage, optimism, and an absence of self-pity have helped Angela to hold onto the childhood dream she had of being a teacher and to treat it like any other challenge that has come her way. “Whatever I want to do, whether it’s finding my way through a building or learning to be a teacher, I just have to figure out the ‘how,’ says Angela. “I have to do things a bit differently, but in the end I get it done.”
Teacher preparation has presented Angela a series of problem-solving exercises that have tested her creativity but also hardened her resolve to succeed. In order to make the teaching go more smoothly, Angela’s first duty on her first day with each new class has been to talk about the subject foremost on every little mind--her blindness. She has explained to the students what it means for her to be blind and stressed the permanence of it. After telling the students what her life as a blind person is like, she has opened the floor for discussion and questions.
If a student wants to know how Ms. Wolf chooses an outfit to wear in the morning, she tells them. If a student wants to know how she finds the milk and cereal in order to make breakfast, she tells them. If they want to know what she sees in the darkness of blindness, she tells them. If they want to know if blind people get married (Angela’s husband is an accomplished musician and is blind), she tells them. Although there are occasions when the children have tested and teased her, doing things like raising two fingers in front of her face and asking her how many fingers they were holding up, for the most part the students get it, Angela says.
“She’s an incredibly gifted teacher,” says Mary Ellen Smith, a facilitator in the College of Education who has monitored Angela in the classroom. “And she has an uncanny directional sense and awareness of her environment. It’s still been quite hard work, though, to teach a classroom full of children. It’s intimidating even for someone who isn’t blind.
“Every time a new problem arises, Angela stops and thinks, okay, so this is the situation as it stands now--what am I going to do to make it work? And she immediately begins to generate solutions. If you can even vaguely imagine what it would be like to monitor and teach a room full of young children, you get some idea of how many obstacles someone who’s blind has to overcome to do this.”
Many of the changes have been a snap to implement. Horizontal stripes of masking tape were placed on the chalkboard in her class last semester so that she could write in a straight, neat line, and she has Braille versions of the students’ books. When students were not writing enough in their daily journals, Angela decided to start feeling the backs of their notebook pages--from the indentations left by the pencils, she could tell if they had filled almost an entire page or only a couple of lines.
“I guess, in general, I probably encourage the children to talk more than another teacher would,” says Angela. “For example, instead of having students raise their hands to answer a question--which obviously would not work for me--I have them announce their names once. Then I call on them in the order that they announced themselves.”
To monitor writing content without being able to read what the students have written, Angela requires them to bring their papers to her and read their compositions aloud. She also uses the popsicle method and draws from a cup of popsicle sticks with the students’ names on them. The student whose name is drawn has to read his or her journal entry to the rest of the class. She monitors how well they are progressing when they’re silently reading their textbooks by stopping at individual desks and having them read portions of the text to her.
“I’ve witnessed something really interesting as I’ve watched Angela over three semesters with these very young children,” says Smith. “The children, after they understand what it means for Angela to be blind, assume more responsibility for their own behavior. They don’t let classmates abuse the situation, and they’re clearly showing they realize they have a role in how well or badly each day unfolds. They have this strangely adult way of dealing with this difference in Angela and begin to think about and react to the blindness in a positive way.”
Asked what her dream work scenario would be, Angela describes a room of second or third graders, levels she prefers because the students still are young but have begun to work more independently and are able to engage in abstract thinking. It’s a class where students have the freedom to be creative and where art, her passion, is incorporated in everything from history to math lessons. It’s a sanctuary where independence and personal responsibility are encouraged and where she serves as facilitator rather than babysitter or drill sergeant.
It’s a dream Angela intends to realize. “I know that Ms. Wolf wants to be a teacher when she grows up,” says Desiree Market, an eight-year-old in Angela’s class at St. Elmo, “and I think she’s going to be a pretty good one. She can teach without seeing, and that’s really hard to do. Especially when the kids are not always good. She’s special and very smart and knows all of our voices, even from the other side of the room. I think her next class of kids is going to like her a whole lot.”
[PHOTO/CAPTION: Cary Supalo]
The Variables of a Blind Person’s Math Experience
by Cary Supalo
From the Editor: During the second week of April an invited group of technology developers, university professors, blind scientists and mathematicians, and other significant players in the math accessibility field gathered at the Jernigan Institute to investigate the state of the effort to make mathematics accessible to blind students and to coordinate and develop new technology solutions to accessing mathematics. Those who attended report that the discussions and reports were stimulating and hopeful. The keynote address on the morning of the first day of the conference was delivered by Cary Supalo, an NFB tenBroek Fellow and a leader in the NFB of Pennsylvania. This is what Cary said:
I am currently a fifth year graduate student at the Pennsylvania State University working on my Ph.D. in chemistry education. I recently received a National Science Foundation research in disabilities education grant to work on a project titled “Techniques and Tools to Enhance Blind and Visually Impaired Students’ Participation in High School Level and General Chemistry Laboratory Classes.” We are developing a suite of tools with Vernier Software and Technology Company that can be used in chemistry lab classes across the country. This project will use JAWS scripts to make the screen reader speak in real time the data being collected by these probes. We are also modifying the high school curriculum at the Indiana School for the Blind, where we will be field testing these techniques along with developing other handheld data-acquisition tools for the blind students to obtain their observational data more independently. We hope this project will open doors of opportunity for blind students to pursue science, technology, engineering, and math careers.
I was asked to comment on my experiences with mathematics as a blind person and the way I got to where I am today. It all started when I was in seventh grade. The end of the school year was quickly approaching. I was enrolled in the remedial math class, scoring top marks on every homework and class assignment. I was under the impression that math involved only addition, subtraction, multiplication, division, percentages, fractions, and the ever-dreaded story problems. Each year I seemed to learn a new area in math. One year it was decimals; another it was the concept of negative numbers. However, as you can see, there was never any progression. When it was suggested in my individualized education program (IEP) meeting that year that I make the jump into algebra, I remember my teacher pulling me out of class to go to meet with my IEP team for the first time. I had never seen this group before or even known that they existed. They explained to me that I was doing so well in math that they felt it was in my best interests to progress to algebra and bypass the pre-algebra class. My first thought was, what is algebra? I thought this was a big decision for me, but it was one that I wanted to make. I believed I could do well, but I understood that bypassing pre-algebra was not the traditional way it was done.
The next year I started eighth grade and algebra class. I had to learn an entirely new terminology of math as well as the more advanced Nemeth Braille code. I was given a textbook in Braille, fortunately. Even so, I had the difficult challenge of taking notes in class. My tape-recording method didn’t seem to work since my teacher said many times, “This times this equals this interesting result.” I tried raising my hand to ask what he was talking about, but I was shy and didn’t like interrupting.
My parents, itinerant teacher, and I had a special meeting with my algebra teacher some time after the first exam, in which I hadn’t performed very well, to discuss what was happening. I explained my problem with note taking when he did not speak all of the variables. He agreed to be more precise in his speaking, and I was allowed to use a Braillewriter in the classroom to take notes. I performed all of my algebraic work on a Perkins Brailler. I then read my work back to someone, usually one of my parents, who transcribed it into print. This method worked quite well, and I successfully completed algebra.
I then moved on to high school and the honors geometry class. I viewed this as even a bigger challenge than algebra because until at least November I would not have a textbook. Those in authority decided that the transcriber should prepare the part of the book to be used second semester, and first semester I would work with hand-transcribed pages prepared by our local transcriber using a hot glue gun to make tactile drawings. This was very difficult for me, and I fell behind in part because I did not receive any part of the book in Braille until the end of October. In the meantime I was asked to try and get as much out of the lectures as possible. As you can imagine, this was difficult. We were discussing concepts like “all vertical angles are congruent” and “side-side-side” and “angle-side-angle” theorems for congruent triangles. I didn’t really understand what they were talking about, but I was at least learning some of the terminology so that, when I finally did receive my Braille materials, I could understand what the words meant.
In an attempt to help me catch up, the school district provided a tutor to help me in the evenings. The goal was to get me up to speed so that I could take my first semester final exam on time. In our school, exams were administered the third week after Christmas break. I worked with my tutor over the break, and eventually I did successfully take my first semester final exam at the same time as the rest of my class, although achieving this goal was quite a struggle.
The second semester was easier than the first because I finally had my book. I eventually progressed through algebra 2 and precalculus using these same methods. In these classes I learned about things like imaginary numbers, parabolas and other types of graphs, the importance of the unit circle in converting degrees to radians, etc. Some concepts such as the X=Y values for the common angles on the unit circle I memorized in an attempt to solve problems relating to trigonometry more quickly. I also spent time memorizing other important values like the square root of 2 and the value of pi (3.14214). These skills later paid dividends on Advanced Placement exams in college as well as on the ACT and GRE exams.
When I wanted to take calculus my senior year, my itinerant teacher informed me, my guidance counselor, and others that no blind person had ever taken calculus before and I wasn’t going to be the first. I was upset, but I reluctantly accepted this pronouncement as my fate. So senior year I took a business math class in which we learned to count change, determine percentages, and other everyday tasks. I could of course do these calculations in my head in a matter of seconds. I could complete the homework before arriving at my next class. It got to the point where the teacher did not even require me to turn in my homework because, having been my algebra 2 teacher, he knew I could do the work. I was required to look at the exercises, perform the tasks mentally, and nothing more. I did fulfill all of the class requirements for this course, allowing me to complete the math requirement to graduate from high school.
After graduation I went on to college. Because of this business math class and the encouragement from my guidance counselor I decided to major in business management and minor in psychology--In other words, a non-STEM [science, technology, engineering, and math] career path.
In 1993, the summer before I began college, I was fortunate enough to learn about the National Federation of the Blind’s national convention in Dallas, Texas. I had never been to such a meeting before and did not know what it was all about. My dad and I decided to go to the convention. I saw hundreds of blind people traveling independently and doing pretty much whatever they wanted to do. There I met a blind high school calculus teacher. I also met a blind electrical engineer, among numerous other mentors. From this experience I learned the importance of having a network of blind people with whom to meet and share ideas. I also adopted the Federation’s positive attitude about blindness so that I no longer let my blindness limit what I thought I was able to achieve. This was a refreshing experience after the business math class.
I spent my first year at Northern Illinois University. I quickly learned Northern was not the place for me since its disabled student services office provided extremely custodial services to the blind students. These services were designed to take care of the blind students rather than to encourage their independence. I also changed my major to electrical engineering. I had an uncle who was an EE, and I had always wanted to be an EE. I soon realized my degree path was limited at Northern and decided to attend a school with a more established engineering and science program. So I transferred to Purdue University, where I enrolled in the engineering calculus class. I requested a Braille textbook and was promptly informed that Purdue did not have to provide me with a Braille textbook. I did not know better, so I was content to try the class with a book on tape.
This was difficult because I ended up spending over twenty hours a week on Braille transcription before I even started the homework or my work for other classes. I eventually had to drop this class. I enrolled in the class the next semester and had similar difficulties.
After not getting through the class, I eventually changed my major. I wanted to be a scientist or engineer but could not do so without this calculus course. I changed my major a number of times, at last settling on communications. I then discovered that, since I had withdrawn from the calculus course first semester with an incomplete because of medical problems, my grade would be entered as an F if I did not finish the class requirements.
About this time I attended a National Association of Blind Students Seminar, where a lawyer from the Department of Justice was speaking. I asked him about the Braille book requirement. He informed me that post-secondary institutions receiving federal monies were required to provide the book in Braille unless they could demonstrate that doing so would be a financial burden on the university. I brought this point to the attention of university officials and made the request again. They then agreed to provide the book in Braille.
I worked out an arrangement with the School of Science at Purdue for an extension on the incomplete so that whatever grade I now earned would replace the incomplete, so I enrolled in the calculus class that fall. Having the text in Braille with diagrams made all the difference. It was still a challenge, but with the access issue solved the challenge of the material actually made it enjoyable. I viewed this class as a gateway to all other technical majors. Because I passed this class, I changed my major and declared it as chemistry. I then took the subsequent calculus classes and successfully passed them all.
Having declared a chemistry major, I was required to take additional classes in the areas of statistics and quantum mechanics. I learned how to do 1-tailed or 2-tailed t-tests, how to calculate standard deviations, and how to calculate probability statistics. This led me into both mechanics and electricity and magnetism physics classes, which climaxed when I reached the dreaded physical chemistry classes, consisting of the study of thermodynamics and quantum mechanics.
These classes required the highest level of Nemeth code knowledge I ever needed. I was fortunate that Purdue provided these documents and their tactile graphics. They were produced by the Taevis Lab. The acronym stands for Tactile Access to Education for Visually Impaired Students. I had to obtain these textbooks on audio tape and use the tapes to follow along with the Braille in order to learn the Nemeth code symbols that were being used, but this method worked quite well. I was able to use the symbols I learned this way on all homework assignments, quizzes, and exams. Once I had passed these two senior-level chemistry courses, I graduated from Purdue with my bachelor of science degree in chemistry.
From there I entered graduate school at Penn State, where I am pursuing my doctorate in chemistry. I was required to take a series of graduate-level chemistry courses in the areas of surface science, polymer chemistry, mass spectrometry, chemical kinetics, quantum mechanics, and organic chemistry. Almost all of these classes required some form of the Nemeth code. Chemical kinetics and quantum mechanics used a large number of the advanced Nemeth code symbols that I had learned my senior year at Purdue. Using the same techniques of working on homework sets with a Braillewriter, taking exams with Braille documents, and responding to conceptual questions on my portable notetaker or a PC, I was able to fulfill these requirements. Using tactile drawings and the Braille Nemeth code has assisted me in every phase of my graduate career. I used them extensively in the defense of my master’s degree in December 2004. Without tactile drawings produced on a tactile-graphics-capable Braille embosser and the refreshable Braille display on my portable notetaker, I couldn’t have completed this degree. These skills will assist me in almost all future presentations and other defenses that I will find myself involved in over the next few years.
In sum, for me, having access to Braille and tactile drawings was the key to my success with mathematics. At that point having computers with speech to read math was only a thing for the science fiction fans.
Because of my experiences with math, I was able to get to where I am today, but there are many blind children who will not want to deal with the access challenges in math. Many perceived obstacles face blind students. For example, there may be problems with accessibility, such as the ones I experienced. However, students may also encounter improperly trained teachers and negative attitudes towards blind students’ mathematical abilities. These factors may prohibit a blind child from studying advanced math such as algebra 2, pre-calculus, and more advanced calculus classes, but this is not an indicator for accurately measuring a blind student’s mental capability to perform math-related tasks.
I also acknowledge that the needs of blind and visually impaired students are variable based on background, visual acuity, and mental capacity. Therefore the ways I have described for myself are not the only ways blind people can learn math. I simply offer my experiences to you today as one illustration of what a blind person had to go through in order to achieve a level of proficiency that allowed him to pursue a STEM career. I think this is one of the major goals for which we have all gathered here today. Once we have set our goal to achieve math accessibility by means of legislative initiatives, technological developments, and other access information resources, we can eliminate these barriers, and more blind and visually impaired persons will want to pursue STEM careers.
I would like to thank the NFB Jernigan Institute and the coordinators of the GAMA [Goals for Achieving Math Accessibility] summit for allowing me to address you all this morning. Thank you very much.
[PHOTO/CAPTION: Andrew Nantz reading Braille]
Braille Readers Making a Difference
by Barbara Pierce
For twenty-two years now we have been working to teach blind kids that Braille readers really are leaders. The contest jointly sponsored by the National Organization of Parents of Blind Children and the National Association to Promote the Use of Braille has encouraged young Braille readers to read as much Braille as they can get their hands on. Our message is at last being heard, and many of our blind kids are entering the Braille Readers Are Leaders Contest on November 1 each year and are reading what seems to many of us astonishing amounts of Braille between then and February 1.
This is great news, and all of our contest entrants are to be congratulated for their efforts. But our intention has never been just to encourage Braille reading; it has been to encourage blind youngsters to become leaders as well. So this year for the first time the reading contest incorporated an additional element. Older youth were also invited to compete for an award for community service. Braille reading speed is important, but getting out and using Braille and our other skills to help the people around us is even more important.
In the 2005 Braille Readers Are Leaders contest a handful of students stepped forward to compete in this leadership component. The winner was Andrew Nantz of Imbler in Union County, Oregon. Andrew has just completed the eighth grade. Here are the two letters of support that he submitted. After reading them you will understand why Andrew is the 2005 winner of the Braille Leaders Community Service Award. Here are the letters his supporters submitted:
To Whom It May Concern:
It gives me great pleasure to write this letter of recommendation for Mr. Andrew Nantz. Andrew, an eighth grader here at Imbler Junior and Senior High School, has spearheaded a fundraising effort for victims of the recent tsunami. Andrew came to me for permission to run a class competition to raise money to send to Northwest Medical Teams to help the tsunami victims. It was his idea for the class that brings in the most money in a week’s period to be rewarded with a pizza party.
Andrew contracted with the owner of New York Richie's, a popular restaurant in town, to see if he would be willing to donate the pizzas to the winning class. He explained all the details and what the money was going towards. Richie was more than happy to help Andrew in his cause.
I had Andrew provide all the information to our student body, which was read over the intercom during morning daily announcements. The response was overwhelming; within a week our school along with our grade school brought in a total of $1,623. The city of Imbler got involved and also donated $250, making the total of over $1,800. According to the local newspaper article every school in our county had raised money to send, which was a commendable effort for kids throughout Union County. But the most rewarding part for Imbler Schools was that we were able to raise the most money. It all started with the little blind eighth grader with a very big heart.
Mike Mills, K-12 Principal
To Whom It May Concern:
I would like to congratulate and honor Andrew Nantz, who visited my second grade classroom in November for National Children's Book Week. Andrew was one of our special guest readers for the week, and he read Brailled copies of two of his favorite Frog and Toad stories. It was exciting for the students, and they were very impressed with Andrew's reading. I was equally pleased as I was Andrew's teacher in second grade when he first got serious about his Braille reading. What a joy to see him now. He read with wonderful expression, and he was very fluent. The students were listening to every word, and though I worried about their attention span without pictures, it was not a problem.
Not only did Andrew read both of the short chapter books, but he also gave the students some inspirational tips on why it was important to become a good reader and how being able to read and comprehend would help them when they got up into junior and senior high school. As an extra reminder he let them know that, when their parents told them to read or to do their homework, they should just do it without any complaints because they were just trying to help them and it would pay off later.
Andrew settled into our special reading rocker and was comfortable in his role as story teller/reader. He interacted with the students and asked them questions as he went along, and he really seemed to enjoy being the teacher. At the end of our time together, he shared his Braille books and even got his science and history books out of his bag to share with us. The students were amazed at the size of the books and understood why he had a suitcase to lug them back and forth to class.
It was a great experience for all of us and one I hope to repeat next year. Andrew will always be welcome in my classroom.
The Braille Readers Are Leaders contest forms are now available from the NFB Materials Center. Let’s all do what we can to inspire older students to meet Andrew Nantz’s challenge to become community leaders as well as reading lots of Braille. Order forms by email at <[email protected]> or by calling (410) 659-9314.
[PHOTO CAPTION: The Walker family from Pennsylvania in the hallway at the Jernigan Institute]
[PHOTO/CAPTION: In this conference break-out session, the audience listens intently to pediatric O & M specialist Joe Cutter.]
Beginnings and Blueprints:
Early Education, Empowerment, and the Jernigan Institute
by Mark A. Riccobono
From the Editor: Mark Riccobono is director of education at the NFB Jernigan Institute. Below is his report on an exciting conference that occurred at the Jernigan Institute in early May:
In one of the early Kernel Books, Dr. Kenneth Jernigan discusses beginnings and blueprints (giving that Kernel Book its title). Dr. Jernigan says that he is not sure when beginnings become blueprints. Had he been present for the first conference on early childhood education for the young blind child held at the NFB Jernigan Institute on May 6 and 7, 2005, we can feel confident that he would have had no doubt that it was a fine blueprint for building a brighter future for blind children.
To provide some background, in August 2003 the Federation held an education summit at the National Center for the Blind. One of the clear themes that emerged from that meeting was the need for the Federation to find ways to train parents and professionals working with the youngest blind children. The group assembled recognized that too often parents are not empowered with the knowledge and confidence to be their child's first teacher. Moreover, parents are led into the trap of low expectations and negative attitudes about blindness, which needlessly limit and shelter their blind children rather than encouraging and empowering them to explore new horizons. Imagine the possibilities if parents raise their blind children under a new, positive philosophy that empowers parents and ultimately children from the beginning rather than having to make up for lost time in the teenage years.
The NFB Jernigan Institute used the work of the 2003 NFB Summit on Education as the basis for establishing an early education initiative. A work group of experienced individuals was put together to assist in the development of the initiative. The work group spearheaded a survey that was distributed at the 2004 NFB national convention by Heather Field, a member of the work group. Along with information collected in the survey, individual work group members drafted documents from their own individual experiences that provide perspectives on “The Top Ten Things Parents of Blind Children Need to Know.” Finally, in the summer of 2004, a special issue of Future Reflections (Volume 23, Number 2) was released focusing on the early years. This issue is available from the NFB Materials Center or on the Internet at <http://www.nfb.org/fr/fr14/fr04setc.htm>.
In order to begin the process of disseminating and refining the NFB's approach to early education, plans were made for the 2005 Beginnings and Blueprints Conference: Meeting the Needs of Blind Children in the Early Years, 0 to 8. Because parents are central to the NFB's approach to early education, the National Organization of Parents of Blind Children is a strong part of the Institute’s work group, and NOPBC played a leading role as a partner in the conference. The initial concept was to focus the conference on Maryland, so the Institute called on the outstanding early childhood professionals from the Maryland School for the Blind's Early Childhood Program. Karen Frank, the skilled supervisor of the program at the Maryland School, was actively involved in the planning and execution of the conference, and many of her staff provided support and expertise.
Sixty-seven people attended this two-day conference, including parents and family members of blind children, early childhood professionals, Head Start workers, teachers of blind students, orientation and mobility specialists, and a number of other people representing related professions. Families and a number of professionals took advantage of sleeping accommodations at the National Center for the Blind. Those accommodations were needed because, like many other Federation events, there were many out-of-town guests. By the time of the conference, word had spread beyond Maryland, and the registration list included individuals from surrounding states, the West Coast, and Canada.
The evaluations from the conference were extremely positive. The major improvement recommended by attendees was more, more, more! More time to network, more time for breakout sessions, and more interaction between parents and professionals.
Each day of the conference was advertised as having a slightly different focus (Friday for professionals and Saturday for families). There was a lot of overlap between the two, allowing for lively and productive discussion. The evaluations showed what we have known for many years--that interaction among professionals, parents, and blind adults is valuable and desired, rather than having separate tracks in which parents and professionals do not interact and share perspectives.
The agenda was packed with a variety of important topics. To kick off the conference, Dr. Marc Maurer greeted the group and set a positive tone by articulating the NFB's commitment to early education for blind children. The session then moved into a keynote panel led by Heather Field, an early childhood consultant who has been blind all her life, and Carla McQuillan, the executive director of Main Street Montessori Association and a member of the NFB board of directors. I had the opportunity to participate as part of this panel, and together the three of us discussed various perspectives on building a nonvisual framework. The blend of personal and professional experiences, high expectations, and positive attitudes about blindness provided the conference attendees with an inspiring and thought-provoking start to their day. The next presentation discussed the legal and systemic frameworks that influence the services young blind children receive. Two individuals presented and answered questions on this topic from their perspectives. The first was Lisa Wright, who is the statewide low incidence VI consultant for the Maryland Department of Education. The second was Leslie Margolis, an attorney for the Maryland Disability Law Center who serves as an advocate for children and families.
After learning about the state and national legal frameworks, the audience enjoyed an energizing presentation by Carla McQuillan about the inclusion framework. This presentation was highly praised by those in attendance. Carla's presentation demonstrated how the Montessori principles reflect what we know today are some of the most effective teaching strategies, even though Montessori developed her approach long before the notion of research-based practices and No Child Left Behind. Carla's presentation also demonstrated that integrating a blind student into the general classroom need not be as complicated and frightening as many believe and that, with the proper philosophy and multi-sensory materials, all students can effectively participate in the classroom community.
The conference then took a break for lunch in the Jernigan Institute's Members Hall. Besides lunch participants enjoyed visiting the NFB book and literature tables, looking through their conference materials, and networking. In fact the lunch discussions were so enthusiastic that lunch was extended to accommodate the networking taking place.
After lunch on Friday three concurrent sessions were available. The first session, offered by Joel Schneider, president of Audio Description Associates, discussed the visual made verbal and how descriptions can be used to enrich presentations of visual material. In the second session parents, professionals, and blind adults came together to offer their perspectives on the benefits of active learning. The principles of active learning are extremely valuable for blind children, particularly those with multiple disabilities. The variety of perspectives offered in this session was useful in teaching participants about the approach. The third session was presented by Joe Cutter, an experienced orientation and mobility specialist who continues to push innovation in early movement and cane use for blind children. Joe’s extremely thought provoking presentation, “Promoting Travel and Independent Movement in Blind Children” (aptly named after his upcoming book), questioned the application of adult-centered practices to movement and travel for young blind children. This presentation ran overtime with questions and certainly promoted a broader blueprint for blind children.
The concurrent sessions wrapped up the first day of the conference, but opportunities were available to tour the Jernigan Institute and the International Braille and Technology Center for the Blind and to shop in the NFB Materials Center. Many participants stayed for the tours or spent more time networking in Members Hall. On Friday evening special activities were scheduled for families staying at the National Center for the Blind. Individual attention from Joe Cutter, Heather Field, and other mentors provided families with an opportunity to expand their blueprints and establish a solid foundation for their children, not to mention get to know new friends and have a few laughs in true Federation fashion.
The second day of the conference included some new faces and many participants from day one. The Saturday session began with a presentation from Dr. Betsy Zaborowski, who told the families, “We built this Institute for your children and their future.” After Dr. Zaborowski’s inspiring opening remarks, Heather Field and Carla McQuillan again provided a one-two punch on the topic of “The Importance of Beginnings.” With personal stories, professional experience, and practical wisdom, Heather and Carla built upon the foundation they had provided on day one of the conference.
Karen Frank then presented the blueprint of the expanded core curriculum or, as we often say in the Federation, the skills of blindness. Karen discussed the various aspects of skills such as Braille, cane travel, and daily living skills and how those skills integrate with the traditional academic subjects. Karen’s presentation led nicely into a presentation by Joe Cutter entitled “Beyond the Four Walls of Your Home.” Joe’s presentation captured the full attention of the audience, and his experience, examples, and video clips demonstrating the bottom up approach in action expanded the audience’s imagination of what their children or students would achieve.
In order to tie the morning together and focus the audience on the future, a panel entitled “Blueprints: Our Personal Experience” presented a variety of unique perspectives. This panel included Brigit Doherty, a special educator; Nikos Daley, a senior at Loyola High School in Baltimore; and Christopher Danielsen, editor of the Voice of the Nation’s Blind. These blind speakers provided information about the things that have helped them to be successful and also what barriers were put in front of them by well meaning individuals.
During lunch a number of exhibitors were on hand to share information with conference attendees. An opportunity was also available to visit the NFB Materials Center. After lunch everyone returned to the auditorium for a brief presentation by Lisa Wright, which expanded on her presentation from the previous day. Before going into the afternoon breakout sessions, all of the mothers in attendance received flowers in recognition of Mother’s Day.
The afternoon concluded with four breakout sessions that were extremely popular. These included “The Importance of Play and Friendships,” “Active Learning and Your Child with Multiple Disabilities,” “Developmental Orientation and Mobility,” and “Teaching Your Child Self-Advocacy Skills.” As with Friday, a number of attendees wished there had been time to attend multiple breakout sessions. However, each attendee was supplied with a thick conference packet, which included handouts from each session and a wealth of articles and resources compiled by the NFB. These conference packets will keep the attendees well armed with information long after the conference.
At the end of the two-day conference, attendees gathered in the Jernigan Institute auditorium to discuss the conference and its impact. The attendees wanted to see more programming of this type offered by the Institute and more resources made available describing and outlining the approaches discussed at the conference. Many conference attendees asked for copies of the audio recordings from the conference, and those will soon be available through the Jernigan Institute.
Without question the Beginnings and Blueprints Conference was a great success. The foundation has been laid to reach out and improve opportunities for the youngest blind children. Additionally a partnership with professionals in the field has been forged. The professionals articulated their need and desire for quality information to help them empower parents and reflect on and improve their own practices. But probably the most important success of this conference was the young blind children walking with their white canes and exploring their environments. These are the future leaders, the future dreamers, the future inventors; and their early start is helping them to build a clear blueprint for success. These children, along with their parents, are the reason we have an early childhood initiative; they are the reason a conference like this is critical. If you are asked about the work of the Jernigan Institute and why it is important, just remember the children who were influenced by our Beginnings and Blueprints Conference and the children we will affect in the months and years to come.
Air Force’s Best
by Jan Jonas
From the Editor: The following article is reprinted from the May 4, 2005, edition of the Albuquerque Tribune. The subject of the article, Robert Vick, is an active Federationist who lives in Albuquerque and is a successful businessman who manages Vick’s Vittles, the contract food provider for an air force dining facility. Robert has overcome great odds to get to where he is, and he now has a trophy to prove it. His story is a great example of how perseverance and determination can bring success; it also illustrates the importance of the NFB’s continuing struggle to protect the Randolph-Sheppard priority in military troop dining.
The Albuquerque man whose culinary team serves up the best chow in the air force is on his third career and still moving. He’s also blind. It’s a journey that began when Robert Vick stepped onto an Albuquerque loading dock in 1983. That dim job site was the last thing he ever saw. A metal pipe slammed onto the back of Vick’s head. As he fell, it smacked his forehead. He put his hands up to fend off the next blow. A knife slashed across his arm. Blood dripped. He dropped onto the concrete. Vick, then a nineteen-year-old student of architecture and engineering at the University of New Mexico, had to put the promise of that career behind him. Since then, excellence has come in another area, one that has gained Vick the gratitude of thousands of airmen. He and his staff at Vick’s Vittles, contract food provider for the Thunderbird Dining Facility at Kirtland Air Force [Base], this year were awarded the national Hennessy Trophy, given annually to the best food service program in the air force. Vick got to the Thunderbird and achieved the award using tenacity and creativity.
The 1983 assault left him blind, partly deaf in one ear, and partly paralyzed on one side. After months of rehabilitation he entered the School of Natural Therapeutics in Albuquerque to train as a massage therapist. “It was like I went to my own little day care,” he said. “Students volunteered to read books for me.”
Administering massage was therapeutic, building up muscle and giving him back most of the use of his left arm. Vick opened his own business, Stress Management Specialists. Four years later he was a passenger in a car that was T-boned by another vehicle. His right shoulder was crushed. Thus ended another career.
The New Mexico Commission for the Blind had programs available for him since the assault, but Vick thought there was some sort of catch. Now he was ready to turn to them. “He reluctantly agreed to let us put him in the Business Enterprise program,” said Art Schreiber, chairman of the commission and president of the National Federation of the Blind of New Mexico.
The first business the commission put Vick into was a small vending stand in Los Alamos, Schreiber said. When Vick first got there, the business was bringing in about $75 a day, he said. “I walked in, and they had newspapers on the floor because it was so greasy. Then I was really depressed,” Vick said. “I couldn’t believe it. I kind of got over the initial stress. I thought, ‘I can turn that around. I can prove myself.’”
His family helped clean the space and build it to his specifications so he could function well. Within three months Vick was doing about $1,200 a day, he said.
He trained someone to take over and started a series of other food-service operations, each time making them successful, then turning them over to someone else. He moved back to Albuquerque, took culinary classes at TVI, and began teaching there.
The contract at Kirtland, which specifies employment of people with disabilities, came for Vick and his staff of fifty-two through the Commission for the Blind in 2002. Thirty-two of his workers have a disability. The air force inspection team that judged the cuisine got a sample of the same treats the Kirtland airmen get every day: Mongolian barbecue, fresh-baked pies and cakes, espresso, a salad bar, and the staple hamburgers and fries.
The prime rib served three Wednesday nights a month is a favorite and brings in lots of hungry young airmen. At a recent meal half a dozen airmen having pizza, roast beef, and spaghetti didn't speak until the first several bites were gone. For them, it’s all-you-can-eat dining excellence, and they chow down.
That morning Vick asked Second Lieutenant Rose Richeson, a spokeswoman for Kirtland, if she'd like to stay for lunch. Richeson hesitated. She said she’d like to but had a busy day. Then Richeson asked if she could come back and bring the staff of the public information office with her. After inhaling the food’s aroma, she wanted a real taste test. The road to the Hennessy award began almost as soon as Vick's got the contract.
The Hennessy inspection team, in addition to checking out the chow, looked at kitchen operations for cleanliness, staff training and knowledge, maintenance, and bookkeeping. Antoinette Griego, head baker and supervisor at the Thunderbird Dining Facility, has worked there for five years. She said she likes working for Vick because “he asks you to go above and beyond everything we do.”
Vick is proud of his staff, and they're proud to work for him, Griego said.
They’re most proud to be named the air force’s best. And neither Vick nor Vick’s Vittles is finished with trying and achieving. “When you reach perfection,” Vick said, “the next day you’re already thinking of stuff to do.”
[PHOTO/CAPTION: Jim Gashel (right), NFB executive director of strategic initiatives, is enthusiastic about his PAC Mate, which he uses with his cell phone to download email on his way to the office in the morning. Mark Riccobono (left), NFB manager of education services, is equally committed to his BrailleNote.]
BrailleNote or PAC Mate:
A Matter of Personal Preference
by Danika Rockett
From the Editor: On May 1, 2005, Danika Taylor, NFB copyeditor, married Don Rockett. When she returned from her honeymoon, she sat down to talk with several electronic notetaker users about the features they liked and did not like in the units they had chosen. Here is the result of those conversations. It is not a careful review by the International Braille and Technology Center (IBTC) staff, but it does contain interesting information and views. This is what she says:
The decision to spend upwards of five thousand dollars on a device that can fit in the palm of a hand and allow blind people to read, write, keep track of appointments, and even do email on the go should not be taken lightly. For most of us contemplating the purchase of a Braille notetaker, the sticker shock involved in the process is also accompanied by the equally unsettling lists of technical specifications and claims and counterclaims which those who sell these devices make.
In this article we turn directly to the experience of several longtime Federationists who use their notetakers every day. Their observations are based not on theoretical or technical data but on the reality of living day in and day out with a particular notetaker.
If you would like to explore your personal notetaker needs with the experts at the International Braille and Technology Center for the Blind (IBTC), they invite you to do so. They can be reached at the technology answer line: (410) 659-9314, option 5 on the automated greeting.
Humanware's BrailleNote and Freedom Scientific's PAC Mate are two of the most popular Braille notetakers. For various reasons some users prefer one machine to the other, but just what is the difference between these two seemingly similar products?
We might begin with physical characteristics, for herein lie the most obvious differences. The BrailleNote is smaller in height and width than the PAC Mate but slightly thicker. To be specific, the BrailleNote is 9.9 by 6.1 by 2 inches, and the PAC Mate is 11 by 6.81 by 1.93 inches. To be sure, these differences are slight, and as J.R. Westmoreland said in his 2005 CSUN (California State University at Northridge) conference paper titled “BrailleNote or PAC Mate: A Side-by-Side Comparison,” the difference in size is a “minor factor navigating in tight areas.” A smaller BrailleNote, the BrailleNote PK, is a mere 6.8 by 3.6 by 1.3 inches, but it comes with only an 18-cell display option, and at around $5,000 the smaller dimensions might not be worth the cost for many users.
The weight of each product varies a bit depending on the model and the size of the refreshable Braille display. The 20-cell PAC Mate weighs 3 pounds, 9 ounces, whereas the 18-cell BrailleNote weighs 2.2 pounds; likewise, the 40-cell PAC Mate weighs 4 pounds, while the 32-cell BrailleNote weighs 2.9 pounds. Therefore, although the PAC Mate weighs more than the BrailleNote, the larger size of the PAC Mate's Braille display may be an important consideration for some users.
Both machines have wireless network access support, the option of a QWERTY keyboard, and similar external connections and hardware slots. Of course these details vary slightly from model to model. J.R. Westmoreland praises the PAC Mate's support of CF cards. “The BrailleNote," he says, "has a limited number of cards that are supported. The PAC Mate, on the other hand, not only supports these cards but many other cards that have drivers for Pocket PC.”
We could go on and on about the characteristics of each machine, but in the end the question of which is better comes down to personal preference. Diehard advocates exist for most notetakers on the market, depending on the individual user's needs.
Adrienne Asch, Henry R. Luce Professor in Biology, Ethics, and the Politics of Human Reproduction at Wellesley College in Massachusetts, is a BrailleNote user. However, she is certainly not a diehard advocate. “The BrailleNote has many fine features," she says. "But it has a few major problems, at least from my point of view.”
Footnotes, or rather the lack thereof, are among Dr. Asch's complaints. “The BrailleNote will not permit the writing of footnotes or endnotes in Microsoft Word documents,” she says. Therefore any articles she writes requiring footnotes or endnotes--and she is a prolific academic scholar--must be written, or at least finished, on the computer using a Braille display or speech, which can be inconvenient and is certainly inefficient.
The BrailleNote “will also not display footnotes or endnotes in Word documents sent to me,” she continues. "This means that I must open the file on a laptop or desktop computer and convert it to ASCII format. If I don't have computer access, I simply cannot read the footnotes or endnotes." These complaints are important, but they demonstrate how much personal needs and preferences determine which notetaker to buy. A person who does not regularly use footnotes or endnotes may not be bothered by the fact that no device using Pocket PC can identify footnotes and endnotes at all.
Another problem for Dr. Asch involves formatting. "Although the manual claims that documents can be prepared in Braille and then formatted for printing, that claim is only partly accurate," she says. "If one wishes to create italicized, bolded, or underlined material in a printed document, one cannot use the format menu within the Braille document to do so. One must manually do this formatting from within the translated file."
She also faults the BrailleNote for reading fewer and fewer of the many documents she wants it to display. "More and more email attachments are in formats, whether advanced versions of Microsoft Word, RTF, or some other format that the BrailleNote will not display," she complains. "Again, the only solution is to take the file to a standard laptop or desktop, convert it to an ASCII text file, and then return the newly formatted file to the BrailleNote. This conversion means a loss of formatting, meaning that I cannot edit the document in the same format in which it was sent to me. The device is no longer a reliable method of reading documents prepared in electronic form that are given to me at meetings, conferences, and the like. I will soon find that I must travel with a laptop, if only to convert the documents I am given, in order to do my actual reading on the BrailleNote. I had hoped with the newest software upgrade, 6.11, that I would have solved the problem of unreadable documents; I have not solved it. When I send examples of unreadable documents to Humanware's technical support staff, they generally tell me that they too cannot read them on their machines, but they have no suggestions or solutions."
Mark Riccobono, National Federation of the Blind manager of education programs, is a satisfied BrailleNote user. In fact he liked the BrailleNote so much that he recently upgraded to the smaller BrailleNote PK. He says that the PK is similar to the previous models, other than the size (it is currently the smallest notetaker on the market) and the USB port.
Unlike Adrienne Asch, Mark Riccobono is not bothered by the BrailleNote's inability to deal with footnotes or endnotes. It isn't that he doesn't use them, but he considers his BrailleNote more of a supplement to his PC than a stand-alone computer, so he doesn't mind transferring documents for editing. One feature he enjoys is the PK's portability and power. "I can carry around my contacts and synchronize them with Microsoft Outlook," he says. "I am on the road a lot, and if I meet someone, it is easy to enter the information into my PK. Then, when I get to the office, I simply synchronize the information with Outlook, and it is there. Also the calendar feature is a major advantage because it too synchronizes with Outlook. And I can work on documents while I am commuting, then transfer them to my PC when I get to work. Basically I treat my PK like a PDA, not like a PC replacement."
He admits, however, that formatting causes the occasional frustration. "Transferring from a Word document causes it to appear in a different format, which destroys the formatting, so I have to go back and correct it. That is definitely frustrating sometimes, especially when I am in a hurry. But I don't worry about it too much because I use my PC most of the time."
Another disadvantage of the PK is its lack of audio streaming ability. While the PAC Mate has the ability to stream audio from the Internet, the PK does not. Anyone who knows Riccobono knows he is an avid baseball fan, and the feature he would most like to see added to the PK is the ability to stream audio, especially baseball broadcasts. Like Dr. Asch's, his complaints are a matter of personal preference. Not every user will consider streaming audio to be a priority when making a purchasing decision.
As for audio quality, though, Chad Allen, government programs specialist (intern) for the National Federation of the Blind, loves the fact that his BrailleNote PK has stereo quality audio for his enjoyment while listening to the many MP3s he has downloaded onto the device. Allen also praises the built-in Bluetooth technology feature on the PK. "I use my Nokia 6620 model cell phone to surf the Internet on my PK," he says. "I use the Mobile Speak software and my cell phone as a modem, and I have another Internet-surfing option anywhere I go." The BrailleNote PK comes with Bluetooth technology installed, whereas this technology must be purchased separately for other notetaking devices. Again, for those who are less computer savvy or are not interested in the capacity to surf the Internet at a moment's notice, this technology does not factor heavily into the decision-making process.
Allen, a Jaws user, mentions that Freedom Scientific does not support the use of Jaws with competing notetakers such as Humanware's BrailleNote PK. "I didn't know this when I purchased the device. I assumed I could use the Jaws screen reader on a PC with my PK doubling as a refreshable Braille Display, but it didn't work. I was disappointed because I had to purchase and install a new screen reader, but overall the PK is a great notetaker, and I am very satisfied with it."
Eric Duffy is an NFB leader in Ohio. He is technologically sophisticated and spends a significant amount of time helping other blind people solve technology problems. This is what he says about his decision to use the PAC Mate: "I was a Braille ’n Speak user beginning in the late eighties. I then got a Braille Lite not long after it came out. Both of these devices were good-quality notetakers, but they are not even in the same league with the PAC Mate. It is far more than a note taker. The capacity and versatility of the PAC Mate exceed that of the Braille ’n Speak and Braille Lite, first developed by Blazie Engineering and now supported, at least minimally, by Freedom Scientific.
"The BrailleNote was the first product in what most of us think of as the modern class of notetakers for the blind. I had heard about the BrailleNote before it hit the market, and I began to use one as soon as I could get my hands on a loaner unit. I liked some things about it but before buying decided to wait to try the new product from Freedom Scientific that was soon to be released. I really wanted to compare the BrailleNote and PAC Mate and make an informed choice about which product would best meet my needs. I have chosen the PAC Mate. Here are my thoughts about both products.
"The BrailleNote is still a proprietary product, which is to say that the Keysoft user interface and suite of applications is developed and supported by the manufacturer of the BrailleNote, Humanware. So off-the-shelf products cannot be used with the BrailleNote.
"I like the fact that the PAC Mate runs on a Windows®Mobile–based technology. This is the same system that sighted consumers use to operate their PDAs. Programs released for PDAs in the general market can more easily be adapted for the PAC Mate.
"I use the PAC Mate every day for word processing, email, and more. I like the fact that I can synchronize email as well as contacts and files between the PAC Mate and my PC. Using the PAC Mate, I can write email messages using contracted Braille and with a key stroke have the message translated to computer Braille and sent. I can work in Pocket Word using contracted Braille and have the file easily translated into print.
"I am pleased with the connectivity of the PAC Mate. Because of it I am no longer tied to my computer to be productive. I can send files to my computer or through email using my wireless network or Active Sync. It is also possible to beam files from one Pac Mate to another or for that matter send them to a laptop or a PDA. I can have instant access to information in contracted Braille as long as the producer of the file can beam it to me or put it on a flash drive.
“I have learned by painful experience that, if I want to be absolutely certain that I do not lose the data I am working with, I must store it in internal flash. When storing information in main memory, one runs the risk of losing it when the PAC Mate crashes, which it does more frequently than I would like, or if it is necessary to perform a hard reset. Information can also be lost if the battery gets too low. In theory, because the PAC Mate has an internal battery, one can wait up to seventy-two hours after the battery dies before recharging the unit without losing data, but theory and reality are very different, and users have learned the hard way not to let the battery lose its charge completely.
“Freedom Scientific strongly recommends that one use Active Sync or Sprite Backup to be sure that data and settings are not lost. Sprite Backup involves saving data to a flash card, and Active Sync enables a backup directly to a PC.
“I very much like the fact that the Braille display can be detached from the PAC Mate. If I am having a problem with my display, I can return it for service without having to send the Pac Mate back. Of course the reverse is true as well. If I am having a problem with the PAC Mate, I can use the display with my PC while the main unit is being repaired. I don't enjoy having to pay extra for Bluetooth cards, WiFi cards, and other peripherals, But again, if I have a faulty card, I can replace it without having to send the entire unit in for service.
“It does seem to me that the BrailleNote is most useful for those who do not need or want to connect to other devices. The operating system is simple, and the learning curve is easy. Freedom Scientific markets the Pac Mate by saying that, if you know JAWS and if you know Windows, you know how to use the PAC Mate. Although I don't fully agree with that statement, knowing these programs certainly shortens the learning curve for new PAC Mate users, yet there is still a good bit to master.
“I do have two serious concerns about the PAC Mate. The first is that Pocket Word is not as functional as it could and should be. In fact it is really better to work in FSEdit, the word-processing program developed by Freedom Scientific. When told about problems that crop up for users who are trying to edit files in Pocket Word, Freedom staff respond by saying that the problem is Microsoft's. The same response occurs when problems with other programs are mentioned. I believe that, if a program has been installed on the PAC Mate by Freedom Scientific, any problems that arise are its responsibility. This is especially true because Freedom promotes the PAC Mate by saying it works with Word and other programs it has not created.
“It also advertises the PAC Mate as a machine that can support many off-the-shelf programs and devices. Freedom Scientific recommends a Web site called <www.pacmategear.com> as the place to find and order up-to-date information about programs and devices that run on the PAC Mate--that is, until a problem develops. Then <www.pacmategear.com> is strictly unofficial. It seems to me that Freedom cannot expect to have it both ways; either it advertises that the site carries programs and equipment that are compatible with the PAC Mate and Freedom supports and will trouble-shoot them, or the company should not try to expand the attractiveness of its product by nominally affiliating itself with programs and hardware it disavows when trouble strikes.
“Another ongoing issue is the fact that Freedom announced its intent to release a global positioning system (GPS) program for the PAC Mate over a year ago and began accepting orders and payment for it. When pressed to divulge what is going on with the GPS, which is still not available, Freedom just says that it is waiting for Destonator, the publisher of the software platform for the GPS system, to make the software changes necessary to run on the PAC Mate. The cynic in me suspects that Freedom announced the GPS system in June of 2004 knowing that it would not be ready for months but eager to stay competitive with the BrailleNote, which already had a functioning GPS system. All software producers exhibit unconstructive optimism about when new products will be available, but accepting orders and billing for the programs months or years ahead of delivery strikes me as unfair. My advice to potential notetaker users is to be sure that the products and features they find attractive and plan to order really are already available or will be so in the very near future.”
There you have the thoughts and experiences of several BrailleNote and PAC Mate users. When all is said and done, a number of notetaking devices are on the market. Cost will usually be a factor in deciding which one to purchase because many of these devices cost several thousand dollars. Potential buyers must consider how they intend to use the notetaker in order to determine which features are necessities and which are just added bonuses. Visiting the Web sites of companies that build or sell notetaking devices can provide lots of information, like specs, prices, and features of different machines, but talking with current users is always a great way to get sensible, useful information about the various models currently on the market. Remember also that the staff of the International Braille and Technology Center of the Jernigan Institute answer questions about notetakers every day. Their expertise and assistance are never more than a phone call or email away.
In short, no electronic notetaker is right for everyone. If you are considering buying one of these little marvels, take the time to work with each device you are considering. Think about how you will use the notetaker, and try using each to undertake the tasks you are likely to ask your notetaker to perform. You will not avoid all the headaches in this way, but you will certainly cut down on them.
[CAPTION: NFB President Marc Maurer and his wife Patricia]
Clinical Trials Fighting Blindness
by David Brown
From the Editor: On Tuesday, April 19, 2005, the Washington Post published a sizeable story discussing the fifty-year fight to discover the cause of and combat retrolental fibroplasia (now known as retinopathy of prematurity). The reporter interviewed President and Mrs. Maurer and several other blind adults to give the story human interest, for at bottom the article is a review of the post-war epidemic of blindness that struck premature newborns and baffled scientists for a decade before cause and effect were linked and clinical trials took their place in scientific research.
An interesting sidelight to this story for Federationists was revealed after it was published. One of the central researchers was Dr. Leroy Hoeck, who explained to the reporter that his interest in this disorder was sparked by his care for a very tiny premature boy who survived against all odds and became the first infant at the hospital to survive despite a birth weight of less than 1,000 grams. Proud of saving the child’s life, he was deeply distressed several months later to discover that the baby was blind. He would not reveal this child’s name, though he was clear that the case had had a profound effect on his life and practice of medicine. After reading the article, David Stayer, one of the leaders of the NFB of New York, corroborated by checking with his mother that he was born at the exact time this baby boy was born and in the hospital where Dr. Hoeck was practicing. He was so small that officials made out a death certificate as soon as he was born even though he was still breathing. It seems safe to assume that our own David Stayer served as the inspiration for this doctor’s dedicated research. Here is the story:
Marc Maurer was born on June 3, 1951, in Des Moines, the second child of a traveling salesman and a housewife. He was two months premature. As is often the case with babies born very early, his lungs were underdeveloped. He spent two months in the hospital. During the first, supplemental oxygen was pumped into his incubator continuously.
In the same city three months earlier, Patricia Schaaf was born. Her father was a plumber; her mother was a school cook. Their first child, Patricia, was three pounds, ten ounces at birth and two months premature. She too got oxygen for at least a month. Both were born prematurely, and both became blind from oxygen given to them in their first weeks of life.
Maurer is president of the National Federation of the Blind, and his wife--the former Patricia Schaaf--is its director of community relations. They work in South Baltimore in a refurbished factory that is the headquarters of the 50,000-member advocacy organization. Marc Maurer, a lawyer by training, has a spacious corner office overlooking the Patapsco River, which he cannot see.
The Maurers were part of an epidemic that began in the early 1940’s and peaked in 1951, the year of their birth. They were blinded by high concentrations of oxygen, which was routinely given to premature infants in the United States during and after World War II. It took fifteen years to discover the link between oxygen and blindness--fifteen years in which a mysterious disease haunted America's best hospitals.
This tragic outbreak was not the first time a medical treatment thought to be beneficial was shown to cause harm. Nor would it be the last. In recent years hormone replacement therapy taken by millions of women turned out to cause heart attacks, not prevent them. Vitamin A supplements don't lower the risk of lung cancer, as many smokers once thought; it may increase it. Antidepressants relieve depression in some teenagers but appear to drive a small number toward suicide, depression's tragic endpoint. Three years ago the pain reliever Vioxx was the fifteenth most commonly prescribed drug in the United States, with $1.8 billion in annual sales. Today some experts believe it may have contributed to as many as 160,000 heart attacks and strokes since its arrival in 1999.
The story of oxygen and blindness is a distant mirror of these therapeutic surprises. But it is much more as well. Of all the elements on the periodic table, oxygen is the one that seems most to symbolize life and health itself. Could extra oxygen be dangerous to tiny babies struggling to survive? It seemed inconceivable!
But it was true. Two doctors proved it more than a half-century ago in a clinical experiment run in the wards of a hospital in Washington. The medical world didn't believe them, at least not enough to change routine practice. So a second, bigger experiment was conducted at more than a dozen American hospitals.
Fifty years ago this summer, the preliminary results of that trial were published. They changed medical history. Almost overnight physicians stopped automatically giving supplemental oxygen to preemies, ending the epidemic of retrolental fibroplasia (RLF), as the disease was called then. (It is now known as retinopathy of prematurity.)
But the study's results did something else equally important and historic. They convinced many American physicians of the usefulness of randomized controlled trials, which had been invented less than ten years earlier in Britain. Not least, the study taught doctors they couldn't assume that what seemed like a good idea--extra oxygen--would necessarily lead to a good outcome.
"Doctors have to approach their patients, and what they think they know, with a certain amount of humility," said Steven Goodman, a physician at Johns Hopkins University's Bloomberg School of Public Health and editor of the journal Clinical Trials. "This is one of the trials that taught us humility." The events that culminated fifty years ago are also a story of self-reliance, doggedness, and even heroism on the part of the blind survivors of RLF and the two doctors who first proved the disease's cause. Those doctors, as it happens, are still alive.
Arnall Patz went on to become the chairman of ophthalmology at Johns Hopkins University School of Medicine. Now eighty-four and officially retired, he lives in Baltimore and still works part of nearly every day on some medical project. Last spring President Bush awarded him the Presidential Medal of Freedom for a lifetime of scientific discovery that began with the oxygen experiment at Gallinger Municipal Hospital, the predecessor of D.C. General. His long-ago collaborator in that work is Leroy E. Hoeck, a ninety-three-year-old retired pediatrician living in Fort Washington.
The discovery they made in 1951 and 1952 didn't come in time for Marc or Patricia Maurer. Nor did it come in time for RLF’s most famous victim, Stevie Wonder, born prematurely in Michigan in 1950 as Steveland Judkins. Nor for 10,000 other babies born here and around the world who became blind from oxygen. But it did come in time for numberless preemies born in the last fifty years who can still see.
SURVIVORS AND PIONEERS
Nobody knows the first infant to become blind from retrolental fibroplasia. But the first recorded in the annals of medicine is James Edgar Pew II. Pew and his twin sister Margaretta were born on July 13, 1940, at the Boston Lying-In Hospital. They were seven weeks premature. Margaretta died in six hours. Her brother held on, thanks to oxygen.
"The child was examined at the age of ten minutes, at which time the respirations were gasping and irregular . . . the baby was immediately given oxygen. After about ten hours, his condition improved," the pediatrician in charge of the premature nursery, Stewart H. Clifford, wrote in the hospital chart, according to an account published in the Saturday Evening Post magazine in 1955.
The boy's father, George L. Pew, was extremely wealthy, a direct descendant of Joseph N. Pew, the founder of Sun Oil Company. (Today, the family name is best known for the foundation four of Joseph Pew's children endowed, the $4.1 billion Pew Charitable Trusts.) Jimmy Pew received the best medical care money could buy. He spent two months in the hospital and got supplemental oxygen almost continuously.
When the boy was seven months old, his parents and some visiting relatives became alarmed when he failed to track the movement of a cigarette lighter his father held in front of his face. (This anecdote, and many details of the following narrative, come from the magazine account by Steven M. Spencer and from a 1980 book, Retrolental Fibroplasia: A Modern Parable, written by a pediatrician and historian named William A. Silverman.)
Even though it was a Sunday, the Pews summoned Clifford to their Beacon Hill house. He examined the child and told the parents he suspected the boy was blind. Curiously, Clifford had just seen a similar case, the infant daughter of a rabbi. "I was shocked to find my second case within a week of my first," he later said.
The Pews insisted an eye doctor be called. With some effort Clifford reached Theodore L. Terry, a Harvard professor of ophthalmology. He came and thought the problem might be congenital cataracts. Within a few days, however, that diagnosis was abandoned. The cause of the Pew baby's blindness was something else--and it also appeared to be something new.
Terry wrote the case up for a medical journal, making reference to the rabbi's daughter and three other blind infants he saw soon afterward at the Massachusetts Eye and Ear Infirmary. All five babies had been born prematurely. In the American Journal of Ophthalmology in February 1942, he made a prophetic observation: "[S]ome new factor has arisen in extreme prematurity to produce such a condition." He also personally notified about fifty specialists of his findings and asked them to look for cases. Soon he had more, and with them a fuller picture of what was happening.
By the time blindness could be diagnosed for certain in the babies, their eyes contained a distinctly abnormal membrane in front of the retina, the eye's back wall, where the visual receptors lie. Terry believed the condition developed after birth but somehow involved embryonic tissue. He tried to reproduce it in laboratory animals, but was unable to. He died in 1948 with 117 cases and no answer.
Proof that retrolental fibroplasia was new and that babies weren't born with it came from a look back at records at Johns Hopkins Hospital. A husband-and-wife research team, Ella and William Owens, found no cases from 1935 and 1944, but five in premature infants born after 1945. All had normal eyes at birth.
But What Was Causing It?
There were dozens of theories. They included high-protein diets, large doses of vitamins, blood transfusions, hormone therapy, and antibiotics--all treatments given with varying frequency to premature infants. Too much light was the other main candidate. Some of the theories were put to the test in small experiments. None panned out.
There seemed to be nothing in common with all the cases except prematurity and, ironically, good medical care. RLF wasn't a disease of incompetence, poverty, or inadequate technology. Quite the opposite. Throughout the 1940’s reports of the disease trickled, and then began to flow, from Canada, Western Europe, and Australia--all places with advanced medical care and high standards of living.
Eventually oxygen made it onto the list of possible causes. The person who put it there appears to have been an English doctor named Mary Crosse. She noticed that RLF didn't occur in Birmingham until 1948, when the National Health Service was created. Then, for the first time, many hospitals could buy American incubators and bottles of oxygen.
The use of oxygen to treat asphyxiation in a newborn was first tried in 1780. It was studied and recommended again in 1900. By the early 1940’s, supplemental oxygen was standard treatment for premature infants in the best-equipped hospitals. What seems to have initiated the epidemic of RLF, however, was the development of incubators that could keep pumped-in oxygen from leaking out. Molded plastics developed during the war made postwar incubators increasingly airtight.
Crosse's observation came to the attention of an Australian pediatrician named Kate Campbell, who worked in three hospitals in Melbourne. One had incubators that could give premature babies air with two or three times the amount of oxygen in atmospheric air. The second used a less efficient way of delivering the gas. The third required patients to pay for supplementary oxygen, so it was “used with more economy,” she wrote.
She looked at the records of her patients for the years 1948 through 1950 and saw a remarkable effect. At the hospital where oxygen was given most intensively, 19 percent of premature babies developed RLF. At the other two, where it was used sparingly, the rate was only 7 percent. She speculated that the adjustment to the oxygen-rich world outside the womb was a stress that premature infants somehow couldn't adjust to.
It was a hunch that in broadest interpretation would turn out to be correct.
When Marc Maurer was six months old, his parents took him to Minneapolis for an eye operation. He had a second when he was three. He had a third when he was six. That's the one he remembers. People with RLF often develop glaucoma, a condition in which the internal pressure in the eyeball rises because of problems in the circulation of fluid. Maurer had glaucoma, and the surgery was intended to relieve it. It did that--and more.
Until then Maurer had a small bit of residual vision in his left eye. He could see large objects at a distance of twenty feet. After the surgery, that was gone. "I lost what I thought of as vision," he recalled recently, speaking in a flat, nearly emotionless voice. "It was very depressing for a kid like me."
When he returned home from the hospital, he refused to do anything but sit inside on a couch for a week. His mother eventually took him outside and forced him to go down a slide in the yard. With great protest he did. Then she made him do it again. He got mad and decided to run away. He refused to go back inside.
It was a crucial lesson, he believes. "It got me out of the theory that blindness would stop me from doing stuff." Still, he adds, his voice heavy with memory, "I know the discouragement of becoming blind. I remember it still."
Maurer attended a school for the blind in Iowa for the first five grades. He learned Braille (as did his mother) and became an avid reader. In the fifth grade he returned home to the town of Boone (population 12,000) and attended parochial school. He says now that he found no insuperable obstacles to learning what he wanted to.
In high school he took extra courses at a junior college. After graduating, he spent a year in a program for blind students in Iowa. There he expressed interest in auto mechanics; the state commission for the blind provided the tools for him to overhaul a car engine. Ultimately he graduated from Notre Dame and got a law degree from the University of Indiana.
Patricia Maurer's parents suspected she couldn't see when at six months she failed to start reaching for things. They took her to the Mayo Clinic in Rochester, Minnesota, and a doctor there diagnosed RLF. She also had a small amount of light perception in one eye.
She spent her entire career in public school. She didn't even learn Braille until she was fifteen, when she mastered it over the course of a summer with the help of a teacher. She took part in school activities in what seemed a normal way. "As a child you really don't understand why things happen the way they do," she recalled. Of her blindness, she says: "I got to the place where I thought it was the way it was supposed to be for me. I knew I didn't want to just sit around. I knew I wasn't going to give up."
She met her future husband in the same training program where he rebuilt the car engine. She graduated from Drake University in Des Moines, where she studied special and elementary education. The couple married in 1973. They have two children, both sighted.
Jimmy Pew remembers Theodore Terry, the doctor who made him the first recorded case of RLF, "as a very kind, gentle man." Terry operated on him twice for glaucoma. Pew can see shadows in both eyes but has no useful vision.
When Pew was about seven, his family moved to Maine. He lived in a large house outside Portland with his parents and an older brother and eventually also with four cousins taken in after their parents were lost at sea. He learned Braille and as a child was a ham radio operator. He attended Brooks School, a boarding school north of Boston, where he was the only blind student. In his senior year he got a guide dog, the first of six. He too is glad he was mainstreamed. "My parents wanted me to go to regular schools. I think it was a good decision."
Pew also went to college, majoring in psychology at the University of Maine. He earned a doctorate from the University of Detroit and is now a clinical psychologist in San Francisco, where he moved in 1972.
Arnall Patz grew up in Elberton, Georgia, the grandson of Lithuanian Jews who immigrated to Baltimore. His father was a peddler who eventually put down roots in a town on his southern route.
One of seven children, Patz attended college and medical school at Emory University, both under accelerated, wartime schedules. He graduated from medical school in 1945 and after an internship at a hospital in Baltimore entered the army. During a posting at Walter Reed Army Hospital, he decided he wanted to be an ophthalmologist. This was also the time he first heard about retrolental fibroplasias, a growing epidemic of unknown cause. When he was discharged in July 1948, he took an ophthalmology residency at Gallinger, the district's public hospital.
It was an unlikely choice for an ambitious young doctor who'd already published a paper (on several cases of a rare allergic reaction he'd seen as an intern) in the New England Journal of Medicine. But Gallinger beckoned for one reason. In the unvarnished parlance of medical training, it had "good pathology"--an abundant and varied harvest of disease.
Working at the hospital when Patz arrived was a pediatrician, Leroy E. Hoeck. He was seven years older and in charge of the newborn nursery. Hoeck grew up in Iowa, graduated from medical school there, and practiced briefly before being called into military service. After discharge in 1946, he took a short postgraduate course in pediatrics at George Washington University's medical school. He then entered a three-year training program at Gallinger.
From a distance of more than fifty years, both men remember a signal moment that drew them irretrievably into the search for an answer to what caused RLF. Patz's came in the summer of 1948, right after his residency began, when he visited the newborn nursery to look for babies with RLF. "I noticed in the nursing notes for the first time a single entry about oxygen. The nurse had recorded that the baby [was] 'receiving oxygen at six liters flow' [per minute]. My interest in oxygen stemmed, really, from that one nursing note."
Hoeck's also involved a single infant--the first baby born under 1,000 grams (2.2 pounds) in Gallinger's history to survive. He was a boy, 997 grams, and Hoeck was his doctor. The baby was "a save" in medical lingo, and Hoeck was proud of his work. "The problem was that, when I happened to see him in the outpatient clinic four months later, that particular baby--" Hoeck stops, unable to go further. He is choked with emotion. After ten seconds of silence, he resumes. "--he was completely blind." He takes a breath. "And that was devastating. I just felt we had to find the cause."
Hoeck began to research the possibilities, which in early 1949 still comprised a long list. He spent days in the library of the Army Medical Museum, on the mall where the Hirshhorn Museum now stands, reading articles. Eventually he found an article from the Staff Meetings of the Mayo Clinic of 1940 by three doctors, one an army captain. They had examined the effects of varying concentrations of oxygen (as might be encountered by bomber pilots) on blood vessels in the eye. They reported that after thirty minutes of breathing pure oxygen, a person's retinal arteries narrowed markedly--an observation not previously made "to our knowledge," they wrote.
With the nudge from that article, Hoeck realized that in addition to prematurity, the one thing all the babies with RLF had in common was exposure to supplemental oxygen. Of course they shared that with lots of babies whose sight was unimpaired, too.
Hoeck shared his suspicions with Patz, who was coming to have his own. Patz noticed that the retinal blood vessels in a premature baby on oxygen were narrowed and constricted, like the adults in the Mayo Clinic study. If the exposure to the high concentrations of oxygen was brief, the vessels returned to normal in thirty minutes or so. But in the babies who'd been in oxygen for days, the constriction seemed to persist indefinitely.
Patz also looked back into Gallinger's nursery records. Even though they usually didn't record the exact oxygen flow rate, it was pretty clear that nearly all the babies who went on to develop RLF had had prolonged exposure to high concentrations of the gas. In fact, over three years it was eighteen out of twenty-one. "I said, 'Roy, the only thing we can do is a carefully controlled prospective study to test the oxygen,' ” Patz” recalled. (The fact that Patz understood the concept of a controlled trial--and Hoeck apparently did, too--is amazing in itself. The first such study, an English trial that proved the antibiotic streptomycin could cure tuberculosis, had only been published in October 1948.)
Patz got a $4,000 grant from the newly created National Institutes of Health (NIH) after his initial application was rejected as unscientific and unethical. He reassured the reviewers that every premature baby who needed extra oxygen to stay pink and healthy would get it. But all the premature babies wouldn't get it automatically.
On January 1, 1951, they started their experiment. Babies weighing under 3.5 pounds were alternately assigned, based on time of birth, to get either 80 percent oxygen for at least 28 days or 40 percent oxygen "only for specific clinical indications." Parents were told about the study after their child was assigned. But they weren't asked whether they wanted their child included, and they signed nothing. This lack of informed consent in the modern sense was standard for the time.
"We weren't doing those babies any harm," Hoeck recalled thinking. "In fact, we were doing what we thought was beneficial in every way."
There was a group worried about harm, though. It was the nurses. Part of the mythology of this trial is that nurses would go around at night turning up the oxygen taps to the low-oxygen babies in a guerrilla operation to save the infants' lives. That story heightens the drama, but Patz today says it's mostly wrong. One or two night nurses did crank up the oxygen to all the incubators when they came on shift, but that occurred during a dry run for the experiment. Patz says he explained the protocol and asked them to stop, which they did.
In May 1953 he and Hoeck stopped enrolling babies. This was what they found: twelve out of sixty premature babies assigned to standard care were blind from RLF. In the curtailed-oxygen group, one out of sixty was. There were also a lot of near-misses. In the high-oxygen group twenty-one babies developed early RLF, which eventually regressed to normal. In the low-oxygen group nine babies showed those changes.
The young doctors published their first-year results in September 1952 (a year after Kate Campbell's report from Australia) and the final results two years later. By that time Patz had successfully reproduced the disease in newborn mice, rats, kittens, and puppies. However, even before the study was finished, the American Academy of Ophthalmology and Otolaryngology (AAOO)--the professional organization of eye, ear, nose, and throat doctors--was making plans to do its own trial of oxygen use. As is usually the case in medicine, a single well-conducted trial wasn't enough to convince doctors to change their practice. The Gallinger study had the additional drawback of being relatively small (and therefore of greater uncertainty) and the product of two unknown researchers.
The AAOO proposed a trial in eighteen hospitals east of the Mississippi River. It would enroll enough babies to answer the question beyond any doubt--provided people could agree how to run it. Some doctors felt that, because the chief problem of premature babies was respiratory distress, limiting oxygen to them was likely to cause brain damage or death. Others felt that giving supplemental oxygen indiscriminately would cause avoidable cases of blindness. Few people were in the middle--and certainly not Arnall Patz and Leroy Hoeck. Neither Johns Hopkins Hospital, where by then Patz had an affiliation, nor Gallinger participated in the study. "I couldn't take part in it," Hoeck said. "I didn't have to be convinced any more."
At a meeting in the mansion house of NIH's new campus in Bethesda, about forty-five scientists met to draw up plans. They wrangled through an entire night, at one point placing a transatlantic telephone call to Austin Bradford Hill, the British biostatistician who had designed the streptomycin-for-TB study. He suggested a Solomonic compromise.
The trial would basically be two studies run sequentially. For three months premature infants would be randomly assigned to routine high oxygen, or oxygen only if they needed it, in a one to two ratio. That would answer the question whether oxygen caused RLF. Then--assuming the study wasn't stopped because of higher mortality in the curtailed-oxygen group--all babies born in the following nine months would get oxygen only for clinical need. That would provide an estimate of the incidence of RLF under oxygen-sparing conditions--a statistic nobody actually knew.
Cobbled together with a speed inconceivable today, the eighteen-hospital study commenced on July 1, 1953. It was run out of a central office at the Kresge Eye Institute in Detroit by a biochemist named V. Everett Kinsey, who'd been interested in RLF since working with Theodore Terry in Boston a decade earlier. The study used random numbers, not every-other-baby assignment as in Washington, to determine which infants would get what treatments. Western Union provided a teletype machine for free, and seven days a week telegrams came and went from the eighteen hospitals.
"This was at the height of the McCarthy era," recalled William A. Silverman, who was in charge of enrolling preemies into the trial at Columbia's Babies Hospital in New York. "Some people from the FBI came up to see me to find out what kind of subversive activity was going on with all these suspicious telegrams." (Silverman died last December.)
The trial closed on June 30, 1954. Before the summer was over, Kinsey and his collaborators had answers, which they presented to a meeting of eye doctors in New York that fall. RLF severe enough to cause blindness occurred in 17 percent of the babies getting routine high oxygen, but in only 5 percent of the curtailed-oxygen group. The death rate in the two groups was similar--22 versus 25 percent. Oxygen--and nothing else--was responsible for the epidemic of blindness in premature infants. Doctors could safely turn it down. In fact, not to do so would soon be unforgivable.
Change in the Air
The preliminary trial results, published in August 1955, and the final sixty-two-page report of "The Cooperative Study of Retrolental Fibroplasia and the Use of Oxygen," which appeared in October 1956, might have been the end of the story. But it wasn't quite. The rate of RLF started dropping in 1952. By 1956 it was roughly at the level of 1946, the early period of the epidemic. In 1960, however, two physicians at Johns Hopkins Hospital wondered if this remarkable decline might have come at an unnoticed price.
They reviewed autopsies of babies who had died in the premature nursery, looking especially for deaths from respiratory complications. They discovered that the percentage of babies dying in the first six days of life rose from eight to thirteen between 1948 and 1958. The fraction of autopsies that found lung immaturity as the cause increased by the same proportion during that time. In 1962 an English physician reported a related and similarly unsettling trend. The longer a premature infant with breathing problems got oxygen, the higher its risk of blindness--but the lower its risk of brain damage and paralysis. Again, the culprit appeared to be oxygen. Only this time it was too little, not too much. Limiting supplementary oxygen to premature babies had a cost: death or brain damage, at least in some of them.
Why hadn't this been recognized in either the Washington study or the eighteen-hospital study? Patz and Hoeck, surprisingly, didn't record the number of deaths in their study, although they wrote that there wasn't a significant difference between the high- and low-oxygen groups. In the eighteen-hospital study, however, the reason there appeared to be no mortality cost is now clear--it's because the babies weren't enrolled in the trial until they were forty-eight hours old. Before then, they could get supplemental oxygen. Those first two days of life were when the tiny infants clinging to life were most likely to die. Oxygen kept some of them alive. When the oxygen was then turned down, they not only lived, they escaped blindness. If the study had denied them oxygen in those first two days, a significant number would never have made it to the point where blindness was the worst outcome. They would have already died--which was the fate of some of the preemies cared for in the poststudy years.
Recognition of this led to a half-swing back of the pendulum by the early 1960’s. Oxygen use was liberalized, especially in the first days of life. Fifty years after the dangers of oxygen were discovered, the safe maximum--if there is one--still isn't known. As increasingly premature babies can be saved, the prevalence of oxygen-induced blindness and damaged vision has ceased falling. The condition is not nearly as common as it was in the 1950’s. But it's still here.
Over the years a lot was learned about the mechanism of RLF. It's now clear that with prolonged exposure to supplemental oxygen, the arteries in the eye not only constrict, they become completely obliterated. That leads to a second growth of vessels, possibly because of a sensation of oxygen deficiency in the eye. This new crop of vessels grows wildly. It can destabilize the whole retina, which in severe cases peels back and rolls up into a useless mass behind the lens—“retrolentally.” Much of this knowledge came from the laboratories of Arnall Patz, his collaborators, and students over the last half-century.
Patz became chairman of the Wilmer Eye Institute, Johns Hopkins's renowned Department of Ophthalmology. Long before then, though, his RLF work was recognized with the Lasker Award, which is sometimes called "America's Nobel." He shared his in 1956 with Everett Kinsey, who ran the big RLF trial, and Jonas Salk, whose successful testing of a polio vaccine was the other big medical news of 1955. Helen Keller, the most famous blind person in the world, presented the award.
Leroy Hoeck stayed at the renamed D.C. General Hospital until 1957. He then entered private practice in the Maryland suburbs of Washington until retiring in 1987. He was asked recently if he remembered the name of the 997-gram baby whose blindness still makes him choke back tears. "Do I know his name?" he answers with incredulity in his voice. "I know it like my own." But he won't say what it is. Perhaps the man is still alive. Perhaps he is still in Washington.
Jimmy Pew, the index case of the RLF epidemic, has spent much of his career in clinical psychology treating the victims of another epidemic--AIDS. As a gay man living in San Francisco since 1972, he witnessed that disease come out of nowhere. He blames no one for his blindness, nor does he find it ironic that the best medical care in America took away his vision. "It was just something that happened," he says.
This, too, is the view of Marc and Patricia Maurer. "I'm one of the luckiest people I know," asserts Marc Maurer. Lucky because he's been able to help a large number of blind people like himself find independence and happiness.
"Now, certain things have changed because of blindness," he says. "There are some things that are different for us than they are for others. Have I ever seen the faces of my own children? No. But it hasn't prevented me from working with them and loving them."
He continues, in a heavy cadence. "Some people say to me, 'Aren't you sorry?' No, I'm not sorry. What the doctors did was give me what they knew to keep me alive. And I am grateful to them for that."
Earlier in the conversation, the couple had been told of Hoeck's memory of the baby unwittingly blinded by his treatment. It was emotional even in the retelling. Patricia Maurer follows up what her husband has just said with this: "Maybe you can give that message to the good doctor who was so upset."
Connecticut Summer Culinary Concoctions
This month’s recipes are offered by members of the NFB of Connecticut.
by Beth Rival
Beth Rival, a resident of Kensington, Connecticut, is the affiliate’s first vice president. She is active in the state and on the national level as well. In her spare time Mrs. Rival enjoys pottery and preparing large amounts of food for family or social functions. Her potato bake is one of our favorites.
1 package Ore-Ida hash browns
1 stick margarine, softened
1 onion, chopped
8 ounces sour cream
1 8-ounce package shredded cheddar cheese
1 can of cream of chicken soup
Crushed corn flakes
Method: Mix together all ingredients and spread in a 9-by-13-inch pan sprayed with cooking spray. Cover with a thin layer of crushed corn flakes. Bake uncovered in a 325-degree oven for one hour.
by Gary Allen
Gary Allen of Bristol is a Connecticut NFB member at large. When he is not working as a disability community resource specialist in a Hartford non-profit, he enjoys demonstrating adaptive technology at our various functions, maintaining his garden, listening to music, and playing with his dog Buster. Mr. Allen enjoys the following recipe so much that he prepares it at least twice a month, in spite of paying for it dearly.
2 cans of crushed tomatoes
3 cans red kidney beans
2 packages McCormick’s Hot Chili Mix
1 teaspoon oregano
1 teaspoon cumin
1 teaspoon chili powder
2 bay leaves
1/2 teaspoon allspice
1 bell pepper, chopped (for three-alarm chili substitute 3 large jalapeno or 2 large habanera peppers.)
1/2 to 3/4 onion, chopped
1 1/4 pound ground beef
1 1/4 pound sausage
3 cloves garlic, minced
1 tablespoon parsley
Salt and pepper to taste
Method: In large pan brown sausage and garlic to render fat. Add onions, peppers, and remaining meat. Cook, stirring frequently until meat is browned. Add tomatoes, beans, bay leaves, and contents of McCormick spice packets. Simmer covered for a half hour to forty-five minutes. Add remaining spices, except the parsley, and continue simmering for an additional half hour. Sprinkle in parsley in the last five minutes of cooking. Add salt and pepper to taste.
Mom’s Baked Beans
by Joyce Kane
Joyce Kane of Stratford wears many hats in the NFB of Connecticut: state secretary, president of the state diabetic division, chapter president, and secretary of the national diabetic division. Mrs. Kane is looking forward to a community relations trip she will be making to India directly after she attends our national convention. When she is not globe-trotting, Mrs. Kane enjoys sharing the following recipe at our summer gatherings.
8 slices of bacon, diced
1/2 cup onion, chopped
4 1-pound cans Heinz Vegetarian Beans in Tomato Sauce
1/2 cup Heinz ketchup
6 tablespoons light brown sugar
2 teaspoons Worcestershire sauce
2 dashes garlic powder
Method: Sauté bacon until almost crisp. Add onions and sauté until onions are tender. Drain excess fat. Combine bacon and onion with beans and remaining ingredients. Place everything in an uncovered two-quart casserole dish. Bake at 375 degrees for fifty to fifty-five minutes or until beans are bubbling. Stir beans occasionally while baking.
by Carolyn Dodd
Carolyn Dodd of West Hartford is the Hartford chapter president and an integral part of every aspect of the Connecticut affiliate. On many occasions Ms. Dodd has been there in a pinch when someone was needed to convey our mission. She recently retired from many years as a teacher in a Hartford Montessori school. When she is not busy working on our behalf, she enjoys entertaining guests and serving them such delights as her famous cucumber soup.
2 cups canned or homemade chicken stock
3 cucumbers, peeled, seeded, and chopped
1 medium onion, chopped
1 teaspoon fresh or dried dill weed
1 8-ounce container plain yogurt
Method: Heat chicken stock and add cucumbers, onion, and dill. Then add one cup plain yogurt. Mix and chill.
Friday Night Ribs
by Richard McGaffin
Richard McGaffin of West Haven is a longtime member of the Southern Connecticut Chapter. By day he is a telemarketer for a local newspaper. By night he is re-inventing himself as a computer hardware technician.
1 or 2 packages ribs, either country style or baby back
1 bottle barbeque sauce, your personal favorite
1 bottle of beer
Method: Place ribs in a large pot. Pour beer over ribs and fill pot with water until ribs are submerged. Bring to a boil and simmer for thirty-five minutes. Pour off water and arrange ribs on a baking sheet. Using a brush, coat ribs with your favorite barbeque sauce. Bake on middle rack in oven for thirty minutes at 350 degrees.
by Debra DeLucia
Debra DeLucia of Windsor is a member of the Southern Connecticut Chapter and the wife of NFB of Connecticut President Al DeLucia. When she is not working as an accounts specialist for a direct mail marketing firm, she enjoys sport shooting, hunting, fishing, sailing, hiking, bird watching, doing yoga, and home decorating. However, her heart’s deepest passion is to become a ballroom dancing instructor. According to her husband, Mrs. DeLucia fancies herself a vegetarian, and the following is one of her favorite recipes.
1 large eggplant, cut into 1/4-inch slices
1 large yellow squash, cut into 1/4-inch slices
1 large red or green bell pepper, cut into 1 1/2-inch strips
1 head garlic, pressed
1/4 cup extra virgin olive oil
1/4 cup teriyaki sauce
1/4 cup soy sauce
4 tablespoons Mrs. Dash Onion and Herb
Method: Place eggplant and squash in a three-inch-deep, six-by-ten-inch plastic storage container with a lid. Add pressed garlic, sauces, olive oil, and Mrs. Dash to container. Stir gently until all vegetables are coated, snap on lid, and shake vigorously. Refrigerate overnight. Set outdoor grill on medium, and arrange vegetables on cooking surface. Roast each side five to seven minutes. Serve immediately.
News from the Federation Family
Mark Harris of Texas writes to report that on Saturday, May 21, 2005, an enthusiastic group gathered to establish the Brownsville Chapter of the National Federation of the Blind of Texas. The officers elected were Mark Harris, president; Rosa E. Garcia Arreola, vice president; Diane Harris, secretary; Hilda Nino, treasurer; and Diana Anguiano, board member. Congratulations to this new chapter in the Federation family.
[PHOTO/CAPTION: Donald Capps]
The End of an Era:
Twenty-four years ago the then governor of South Carolina appointed Don Capps to serve as a member of the board of commissioners of the South Carolina School for the Deaf and Blind (SCSDB). He has served continuously on that body ever since and has been its vice chairman for the past two decades. In recent years the current governor, Mark Sanford, has disagreed with the NFB of South Carolina on a growing list of issues important to blind people.
To no one’s surprise he has just notified Dr. Capps that he will not be named to another term as a SCSDB commissioner. This brings to a close an exemplary career of service to the school by one of its most distinguished alumni. Here is the letter that the chairman of the commission wrote to Dr. Capps when the governor’s decision was announced:
April 15, 2005
I am writing to congratulate you on almost a quarter century of outstanding service to the South Carolina School for the Deaf and the Blind Board of Commissioners. Thank you for your continued commitment to the school and to individuals who are blind, deaf, or sensory multidisabled.
As I look back over your service to the SCSDB Board and to the greater community of sensory disabled individuals in our state and across the country, I am struck by the great leadership you have demonstrated, often in the face of adversity. You have made history as the school’s first commissioner who was appointed to represent the blind community at large. You have led admirably as the school’s vice chairman for two decades. And you have worked tirelessly for more than fifty years to promote the employability of individuals who are blind through your service as a member and leader of the National Federation of the Blind.
You have achieved great accomplishments in improving educational, employment, and recreational opportunities for individuals who are blind or deaf. Your initiation of advocacy groups and legislative action have resulted in a significantly improved quality of life for thousands of individuals and increased awareness of the capabilities of individuals who are sensory disabled.
Your public accomplishments have been momentous, but you and your wonderful wife Betty have also taken the time to make a difference in individual lives. I am often told of your visits to individuals who need assistance.
It has been an honor to serve alongside you, and I wish to extend our appreciation to you on behalf of the Board, students, and staff of the South Carolina School for the Deaf and the Blind. I would also like to encourage you to visit us often, to be an active participant in the school’s activities, and to continue to serve as an encourager to us all.
With warm regards,
Norman F. Pulliam
Chairman, Board of Commissioners
We salute Don for his commitment to quality education for the blind children of South Carolina and for his principled stand on rehabilitation and vending issues.
On Saturday, May 21, 2005, the Sno-king and Greater Seattle Chapters of the National Federation of the Blind of Washington jointly sponsored a legislative luncheon at the Marie Calendar Restaurant in North Seattle. In the presence of approximately fifty Federationists and friends from these chapters along with a few special guests from other regions of the Washington affiliate, this function successfully served the twin purposes of educating leaders in state government about the work and goals of the NFBW and its parent organization and presenting an opportunity for NFBW members to learn about the efforts of the Washington state legislature achieved during the just-concluded term.
Members enjoyed fellowship over lunch and the awarding of door prizes throughout the session before Bennett Prows, NFBW first vice president, ably served as master of ceremonies for the afternoon program. Featured guests included state representative Toby Nixon (Republican) from the forty-fifth legislative district, Congressman Eric Wiseman, recently appointed to serve on the board of trustees of the Washington State School for the Blind; and our own Mike Freeman, NFBW president.
President Freeman offered a general introduction about the mission of the NFBW for the benefit of new members and invited guests. Mr. Wiseman took this opportunity to promote his emerging commitment to quality education for blind children in Washington State and to affirm his belief in the value of relying on consumer direction to discuss best results for young blind learners. Finally, Representative Nixon surveyed the matters covered by the state legislature of particular interest to blind Washingtonians, giving special priority to a discussion of the study of residential schools commissioned by the legislature this year and a promise to be mindful of our needs for accessible voting, while also touching on issues of general interest to all residents of Washington State.
NFBW leaders also used this occasion to surprise Kris Lawrence, NFBW Greater Seattle Chapter president and affiliate second vice president, with the inaugural presentation of the Unsung Hero of the Federation Award, a tangible recognition of one of our own who regularly goes above and beyond in performing the sometimes inglorious work of this organization. All agreed that Kris was a most deserving first recipient of this award, and everybody shared in celebrating her invaluable contributions to the NFBW.
As the afternoon event drew to a conclusion and everybody savored the last delicious morsels of their Marie Calendar pie, we agreed that this innovative joint chapter initiative had been a resounding success. It is likely that a similar event will be planned for next year.
The National Federation of the Blind of Florida held its annual election at the 2005 state convention in Boca Raton, Florida. Newly elected officers are Kathy Davis, president; Dwight Sayer, first vice president; Dan Hicks, second vice president; Merry Schoch, secretary; Gloria Hicks and J D Townsend, board members. Other officers not up for election are Tom Hartig, treasurer; Elizabeth (Betty) McNally and Joe Minichiello, board members.
On May 14, 2005, the following officers of the NFB of Alaska were elected: president, Steven Priddle; first vice president, Larry Meader; second vice president, Allen Waldron; secretary, Helen Eckman; treasurer, Candace Powell; and board members, Don Stiffler and Bobbie Cleland.
Notices and information in this section may be of interest to Monitor readers. We are not responsible for the accuracy of the information; we have edited only for space and clarity.
[PHOTO/CAPTION: Richard Heigh repairs a Brailler using an Allen wrench.]
Car Mechanic Repairs Perkins Braillers:
Sister M. Elaine George, IHM, who repairs Braillers herself, recently sent us the following human interest story:
Richard Heigh built models of cars, ships, and planes as a child. By sixteen he was rebuilding starters and alternators. After high school he worked as a carpenter, which allowed him spare time to rebuild cars for drag racing. In 1988 Richard was diagnosed with retinitis pigmentosa (RP) though he could still work and still rebuild cars for others to race. But by 2000 he had only light perception and lost his job. Undaunted, he devoted full time to maintaining and updating his car. In 2002 Richard registered with the New Jersey Commission for the Blind and received rehabilitation. He learned some Braille, orientation and mobility skills, and practical applications for daily living.
While he was in the program, a student teacher working with Richard’s mobility instructor learned of his mechanical ability and suggested that he learn Brailler repair. Her son attends a day school for children with visual impairments, and his Braillewriter had been repaired by Sister M. Elaine George, IHM. So Richard called Sister Elaine and arranged for Brailler repair instruction.
In the next year he spent more than one hundred hours disassembling, identifying parts, reassembling, and fine tuning thirteen Braillewriters. He used his talent as a mechanic to create specialized tools to aid with the assembly of the more than 700 parts including minute compression springs, stylus shoe spacers, and link pins. In June 2004 Sister Elaine introduced Richard to the master Brailler repairist at Howe Press in Watertown, Massachusetts. He observed Richard as he diagnosed and repaired a Braillewriter with multiple problems and was impressed. Richard Heigh has now earned certification as a competent Brailler repairist.
He has started a small Brailler repair business in Linwood, New Jersey, called the Brailler Repair Shop. To date he has repaired Braillers from the Pennsylvania College of Optometry, the Montgomery County Association for the Blind, St. Lucy Day School for Children with Visual Impairments, and some individuals. Call (609) 601-0557 if you want your Brailler repaired.
By the way, Richard has recently purchased a 1997 Ford Ranger race truck, so he is still burning rubber while resurrecting Braillers.
Attention Salad Lovers:
Carmela’s Gourmet, owned by blind entrepreneur Carmela Cantisani, is offering her six gourmet salad dressings at the special price of $25 for six twelve-ounce bottles (including shipping) or five six-packs for $100 (including shipping). We will donate $5 of the sale of each six-pack to the NFB Imagination Fund. Great as gifts, these award-winning dressings are made with all natural ingredients, have no sugar, are low in sodium, and are cholesterol-free. The flavors currently available are Vinaigrette Authentique, Balsamic Vinaigrette, Low Fat Provençale Vinaigrette, Low Fat California Caesar, Low Fat Roasted Garlic Fantasy, and Low Fat Mediterranean Mystique Vinaigrette.
To order, please send your check to Carmela’s Gourmet, 415 English Avenue, Monterey, California 93940. If you wish more information, please visit our site: <www.carmelasgourmet.com>. Please mention the Braille Monitor when placing your order.
Braille Alphabet Buttons from the Braille Superstore:
Are you always on the look-out for fresh new ways to introduce folks to Braille? Could you use a great new fundraising idea? Our brand-new Braille alphabet buttons are so different, unique, and just plain cool that sighted and blind people alike can't help noticing them. Each two-inch button easily pins to your shirt or jacket and features all twenty-six letters of the Braille alphabet embossed in perfect, raised dots. And for the benefit of print readers, the words “THE BRAILLE ALPHABET” appear in a stylish font behind the actual Braille letters.
To order a five-pack of Braille alphabet buttons for $9.95, please visit <www.braillesuperstore.com> or call (800) 987-1231. Or, if you'd like to order at least 500 personalized buttons printed with your organization's logo, complete with your company name in Braille, please call us for lead times and pricing info.
Looking for Book Submissions:
In an effort to enhance the positive image of visually impaired people, Ann Morris Bliss is co-authoring an anthology of poems and short fiction which portrays visually impaired persons in an uplifting, inspirational manner that touches the soul by depicting refreshing contemporary images of blind people. Our goal is to widely circulate this book as a benefit to the general population and those losing their vision.
The only criterion is that the works say something constructive or helpful about what it is to be visually impaired. There are many ways a visually impaired person can benefit society at large, and we aim to feature them in our practical spiritual book of poetry and prose.
Please email all personal submissions, including screen plays, plays, and radio and television scripts, and references to other literary works, to <[email protected]> and to Cheri Langdell at <[email protected]>. If necessary, you may mail them to Ann Morris Bliss at 551 Hosner Mountain Road, Stormville, New York 12582. Choice of materials for the book is the sole discretion of the authors.
Position available at the South Carolina Commission for the Blind:
The South Carolina Commission for the Blind is currently recruiting for the position of commissioner. The SC Commission for the Blind is a state vocational rehabilitation agency serving individuals who are blind or severely visually impaired. With an annual budget of ten million dollars, the scope of services includes vocational training and job placement, prevention of blindness, services to older blind, services to children, and the administration of a business enterprise program (Randolph-Sheppard).
Nature and Scope of Responsibilities:
The commissioner reports to and works at the will and pleasure of a seven-member governing board, serving as the chief executive officer of the agency. Responsibilities include, but are not limited to, the day-to-day operation of the agency, with duties including budget planning and development, policy development and implementation, human resources, staff development and training, program review, compliance with state and federal regulations, and liaison with the South Carolina general assembly.
This position requires a minimum of a master’s degree in rehabilitation or closely related field, and an earned doctoral degree from an accredited university is highly desirable. A minimum of five years experience in rehabilitation or closely related field is also required. Applicants must also be able to demonstrate executive level communications skills, including exceptional writing skills.
The salary range is $63,887 to $98,976. Salary offerings will be based on applicant’s qualifications and experience. Salaries above the minimum must be approved by the Budget and Control Board and the Agency Head Salary Commission.
Interested individuals may apply by submitting a current resume, completed state of South Carolina application for employment, a list of three professional references, and a letter of interest specifically addressing suitability for this position. The closing date for this position is July 20, 2005. Applications can be downloaded at <www.jobs.sc.gov>. Please send all required information to Commissioner, State Career Center, 2221 Devine Street, Suite #100, Columbia, South Carolina 29205.
PartyLine Talking Cassette Support Group:
Send for your free sample copy of this cassette publication to Sanford Rosenthal, 3360 NE 33rd Street Apartment 4, Fort Lauderdale, Florida 33308. Make requests on cassette, in print, or by email at <[email protected]>. Please don't send requests in Braille. If you decide to subscribe, the cost is $7 a year.
The notices in this section have been edited for clarity, but we can pass along only the information we were given. We are not responsible for the accuracy of the statements made or the quality of the products for sale.
Hoping to Buy:
I am looking for a pre-owned portable Talkman recorder preferably Panasonic (vintage late 1980’s to early 1990’s) in good working condition. Will consider a unit that needs repair. Contact Justin McDevitt, email <[email protected]> or by telephone at (651) 646-9659, after 5:00 p.m.
Free to Good Home:
American Bible Society Recording of the New Testament, Revised Standard Version read by Alexander Scourby, recorded at 16 2/3 RPM. Well used but in moderately good condition. Fifteen records. If interested, contact Barbara Pierce, 237 Oak Street, Oberlin, Ohio 44074, (440) 774-2216 or email <[email protected]>.
My husband recently died, so I have the following visual aids that I would like to sell:
CCTV VoyagerX1 Visualtek w/b&w fifteen inches, VTEK monitor. Mounted stand, in good working condition. Asking $250.
CCTV VoyagerX1 Visualtek, with stand but no monitor, in good working condition. Asking $100.
ZoomText (Blue box) disk 8.11, also an 8.02 trial version, ZoomText Usher Guide 8.1, ZoomText Quick reference guide version 8.1 and 8.0. I will throw in Point and Speak Version 3.0. Asking $350. Contact me at (559) 292-6734 or at <[email protected]>.
Computer completely loaded and configured for blind users, excellent condition. DoubleTalk Lite synthesizer: computer completely configured for blind users with hot key and optimal adaptive software performance AMD Athlon 2500+, ASUS A7N8X nVidia motherboard, 512 MB Kingston 333MHz DDR memory, Seagate ST380013A 80 gig 7200rpm 8 mg cache HD, Creative Labs CD5230E 52X CD drive, Yamaha CRW2200E 20X10X40X CD burner, 56K modem, multi-channel PCI sound card, floppy drive, 6 USB ports four back, two front, built-in Ethernet, with Windows XP Home SP2 with license and manual, MS Office 2000 Premium, Norton Anti Virus 2005, JAWS 6.1 with CDs and authorization and previous versions CD 5.0 and 4.0, OpenBook 6.0 with manual and all documentation in original packaging, Duxbury 10.2 software with manuals and CDs, Spybot and Ad-aware, Skype, Eudora email, Anytime Deluxe scheduling software Pro 8, Quicken 98, HP Scan Jet 6300C scanner, 15-inch Envision Model EN-LM 500 LCD monitor, speakers, mouse, and keyboard, $3000. Also for sale, DoubleTalk Lite synthesizer in excellent condition, asking $195. Contact Laura Ann Grymes, (979) 680-0022, email <[email protected]>
I pledge to participate actively in the efforts of the National Federation of the Blind to achieve equality, opportunity, and security for the blind; to support the policies and programs of the Federation; and to abide by its constitution.