Braille Monitor                                                                                                 August/September 2004

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The Role of the Consumer in the Development of
Programs of Research and Training

by Fredric K. Schroeder, Ph.D.

Dr. Fred Schroeder
Dr. Fred Schroeder

From the Editor: On Sunday afternoon, July 4, Dr. Fred Schroeder, research professor at San Diego State University and past commissioner of the United States Rehabilitation Services Administration, came to the podium to deliver a brief but powerful address to the Convention of the National Federation of the Blind. These were his words:

Five years ago, in this very room, we committed ourselves to raising nearly twenty million dollars to construct a new, state-of-the-art research and training institute for the blind. At the time the task seemed overwhelming, yet today, only five short years later, we again come together, this time to celebrate our accomplishment, our fulfillment of that dream. The new institute, which bears the name of Dr. Kenneth Jernigan, now stands as a monument to our collective dedication and determination. On January 30 of this year we celebrated the grand opening of the National Federation of the Blind Jernigan Institute.

It was not a celebration of a new building, not a celebration of bricks and mortar, of steel and concrete, of tile and paint; when we stood together in Members Hall, we were there to celebrate the physical expression of our collective action. We were there to remember all we have achieved together and to renew our commitment to meet the challenges ahead. A building must be adequate to serve the purpose for which it is intended, but its importance lies not in the building itself but in the hopes and dreams that led to its creation, the sacrifice and commitment it represents.

When we think of the United States Capitol, we do not simply think of a building, a place to conduct business, to meet and to plan and to forge agreements; but of course all of these things take place in the Capitol building. When we think of the U.S. Capitol, we think of democracy and our way of life. We think of freedom and the right of people to guide their own destinies and to govern themselves through elected leaders. The United States Capitol is a building, but its significance is as a symbol of freedom and liberty.

Similarly, when we think of Vatican City, we do not think of it merely as a collection of buildings, a place to administer the affairs of the Catholic Church, a place to preserve and protect archives and sacred relics. We understand that its importance transcends function.

Yet the importance of a building, its symbolic power, is not a product of its size or grandeur. Great importance is not reserved for imposing structures, buildings on the scale of the Taj Mahal, Buckingham Palace, the United Nations, or the Pantheon. Indeed, the most humble of buildings can be powerful and enduring symbols, inspiring people to do great deeds, evoking passionate feelings of loyalty and patriotism. Two years ago I had the distinct honor of participating in a ceremony in Coupvray, France, at the birthplace of Louis Braille. The home was modest, but its impact on me was powerful. Standing in the morning sun, I was profoundly moved, reflecting on the impact one person's life can have on the lives of many others. Yet to the public the significance of the Louis Braille home is narrowly conceived as an interesting, humble monument to a clever reading system for the blind. What then is the true legacy of Louis Braille, the lesson of his life?

When, at the age of ten, young Louis Braille entered the Royal Institution for Blind Youth in Paris, he found a library containing only fourteen books made of raised letters. Although he was determined to learn to read, the system of raised letters was agonizingly slow. Two years later, when Louis was twelve, he began modifying a system of raised dots and lines developed for the French army. But his new reading system was not immediately embraced or accepted. Indeed, it was first dismissed, then vilified, and finally banned from use. It was not officially recognized or taught at the school until after his death.

The significance of Louis Braille's life goes far beyond that of the creator of an efficient reading medium for the blind, although that contribution is powerful enough in its own right. Rather the important lesson is found in the opposition, the depth of resentment Louis Braille encountered when he sought to offer his reading system to others. At that time it was assumed that the blind were the wards of their sighted caretakers, not able to guide their own lives, not able to create for themselves or find solutions to their problems. Louis Braille's efforts to improve on the reading system available to the blind were seen as ungrateful, pretentious, and insulting to sighted school officials. Yet the school officials were not bad or evil men. They did not wish him ill. Their views about blindness merely reflected society's assumptions about the inherent limitations of blindness and the inherent inferiority of the blind. The lesson of Louis Braille's life is the hard yet powerful truth that we must liberate ourselves, not wait for others to bestow liberty on us.

The resentment of the master for the ward who dares to challenge his or her subservient status is not unique to the blind. At about the same time Louis Braille was suffering censure for daring to presume that he could improve on the reading system created by the sighted for the blind, another expression of the oppression inherent in the master-ward relationship was taking place across the water in America.

Beginning in the 1830's in the United States, medical journals began describing a type of mental illness peculiar to African slaves. At that time the dominant society assumed that the relationship of master to slave was implicit in the natural order of life. For society to flourish, its members had to recognize their appointed place and accept it as inevitable and preordained. Accordingly the medical literature at that time reported that a slave who ran away from his master must be mentally ill, since by running away the slave had demonstrated that he was unaware that he actually preferred slavery to freedom. Yes; it was assumed that the slave preferred slavery to freedom, and to run away was proof of mental illness. Society's assumptions ran so deep that no other explanation could be imagined.

Sound familiar? In 1951, at the annual convention of the National Federation of the Blind, our then president Dr. Jacobus tenBroek reported on a scholarly presentation made the year before by a well-known psychologist, Dr. Thomas Cutsforth, to the effect that the condition of blindness invariably imposes psychological devastation, a neurotic personality, on the blind person resulting in either compulsive compensation or hysterical withdrawal. According to Dr. Cutsforth, both responses are fundamentally neurotic. So, if we accept our diminished status, we are neurotic, and if we reject it, we are neurotic. Any attempt to assert our normalcy is dismissed as compulsive compensation and therefore, by definition, neurotic.

As with the African slave, society assumed that attempts to assert our most basic human worth, to assert our normalcy, to assert our dignity and right to freedom and equality were incontrovertible evidence of our maladjustment, our neurosis, our inability to recognize and accept our inevitable lot in life. But of course, as with the runaway slave, we are not neurotic by virtue of our claim to equality.

There are other institutes devoted to research and training for the blind. Why then create a new institute, a new center to conduct training and to develop new technology? The simple answer is that no one can give us freedom; no one can grant us equality; we must claim them for ourselves. In the early 1800's it was not the sighted officials at the school for the blind in Paris who gave us literacy; it was a blind person, Louis Braille. A century later another blind person, Dr. Jacobus tenBroek, opened the door to freedom when he founded the National Federation of the Blind. This time, however, it was not a single blind person working alone. In 1940 Dr. tenBroek opened the door to freedom by creating a means by which we could come together and begin working collectively to change conditions and open new opportunities for ourselves. He inspired us and gave us hope for the future.

In the 1950's we were deemed to be neurotic, relegated to lives of isolation or lives spent futilely struggling against our inferior status. Yet by that time, only a decade after our founding, we already knew better. We were no longer willing to have others decide for us our place in life, no longer willing to have others define our abilities or prescribe our opportunities. We knew we could live normal lives and compete on terms of equality with others. Accordingly, soon thereafter in 1958 Dr. Kenneth Jernigan, our longtime leader, demonstrated that we could integrate our philosophy into the operations of a state program when he assumed the directorship of the Iowa Commission for the Blind and, by so doing, transformed the lives of countless blind people.

Each of these individuals—Louis Braille, Jacobus tenBroek, and Kenneth Jernigan—was a pioneer; each was an individual of great strength and ability; each was a person of great personal integrity and character; yet each encountered opposition, suspicion, and resentment from the established blindness system. Rather than aiding the blind in their struggle to expand opportunities, the profession posed an additional and powerful obstacle—an obstacle bearing the legitimacy of the professional, presumed to possess the knowledge and experience to know what was best for the blind. The established blindness profession did not give us dignity and a belief in our right and ability to direct our own lives; we took these things for ourselves.

And that pattern continues. In 1986 Dr. Marc Maurer became our president. He has led us through times of struggle and through times of growth and accomplishment. Some of the challenges we face today are new, and others familiar, but the pattern of needing to seize opportunities for ourselves remains unchanged. When we worked to have blind people admitted to university programs of orientation and mobility, the profession fought us. When we introduced the idea of teaching young blind children to use canes, the profession fought us. When we introduced Braille bills in the states to combat the growing tide of illiteracy among the blind, the profession fought us. When we worked with the Library of Congress to develop a Braille competency test for teachers of blind children, the profession fought us. When we began a university program in orientation and mobility based on our philosophy, the profession fought us. For more than thirty years we have sought to eliminate the shameful practice of paying blind people sub-minimum wages in sheltered workshops, yet until very recently the profession fought us.

Of course this does not mean that the blindness profession is our enemy any more than society at large is our enemy. This does not mean that no good has flowed from the professional blindness system; of course it has. Indeed, our relations with the blindness system are better and more productive today than at any time in our history. What it does mean is that we bear the responsibility to strive for ourselves to attain our goals (we hope with the aid and support of the blindness system), but nevertheless the responsibility remains ours to strive for our goals with or without the help of others. Our struggle is not against bad or evil people who wish us ill; rather it is against the limited assumptions implicit in society's thinking about blindness, whether those assumptions are held by society generally, by blindness professionals, or for that matter by us as blind people ourselves.

At the grand opening celebration, when Dr. Maurer announced that our new building would be called the National Federation of the Blind Jernigan Institute, we knew the name had not been given casually or without thought. We knew it had not been done merely as a polite remembrance of a respected past leader. The name �Kenneth Jernigan� represents our most fundamental beliefs, our shared history, and our most fervent hopes for the future. No man can live forever, but the hope and courage his life inspired can and should live eternally. By giving our new institute Dr. Jernigan's name, we have made a solemn pledge to continue the work he began. Will our actions honor Dr. Jernigan's memory? Will we show ourselves worthy of the trust and confidence he placed in each of us?

What will we have accomplished one year from today? What will we have achieved a decade from now? If we have achieved much, the accomplishment will be ours; if we have achieved little, the shame will be ours. No one can give us freedom; we must claim it for ourselves. The National Federation of the Blind Jernigan Institute opens a bold new chapter in our struggle for first-class status, our struggle to live free from prejudice, free from isolation and dependency. It stands as a monument to our collective hard work and dedication, as a monument to our past, and as a symbol of our determination to meet the challenges that lie ahead. We will meet those challenges; we will honor Dr. Jernigan's memory and faith in us; and we will commit ourselves individually and collectively to help the Jernigan Institute realize its full potential.

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