The Blind Doctor: The Jacob Bolotin Story

Reviewed by Mimi Winer, Wayland, Massachusetts

I recently read an absorbing biography about a blind physician. The book tells the story of Chicago-born Jacob Bolotin (1888-1924). According to the author, Rosalind Perlman, this doctor was the first person born without sight to receive his license to practice medicine.

The author vividly portrays the life of this determined, brilliant man. Besides discussing the struggles he endured to achieve his dream of becoming a practicing physician, she describes the hard-won training that enabled Bolotin to develop into an outstanding cardiologist and lung specialist.

Published in 2007, THE BLIND DOCTOR: THE JACOB BOLOTIN STORY (DB64720), is available through the NLS/Bard Talking Book Program.

Jacob Bolotin was the youngest of seven children. His parents, impoverished Polish Jews, had immigrated to America six years before his birth. Their last three children were born totally blind. It is interesting to note that Bolotin’s life overlapped that of the famous Helen Keller–a few years his senior. While Keller used her disability as a means of earning her living, Bolotin chose a career which by its very nature implies the necessity of eyesight. Unfortunately, unlike Keller, who lived well into her 80s, Bolotin had only 36 brief years to leave his mark on society.

It took time after Jacob’s birth for his parents to recognize that he had no sight. His eyes looked normal, and he had the innate ability to make perfect eye contact. However, just as his blind siblings, Fred and Sarah, had done at his age, Jacob crashed into the walls and furniture constantly as he began to crawl. It became obvious that the baby could not see.

When his mother went to enroll six-year-old Fred in public school, Jacob, now age four, wanted to go, too. The blind brothers had always done everything together. Upon hearing that Fred and Jacob were blind, the principal told their mother there was no place in the public schools for blind children.

Since the public school system could not educate the children, the Bolotins applied to the local Jewish Training School for admission. The school’s principal was willing to give Fred a chance, but he indicated that Jacob was too young. The precocious child immediately stated he already knew as much as his brother. To prove it, Jacob recited his A B C’s and then breathlessly counted all the way up to one hundred. Charmed by Jacob’s enthusiasm for learning, the principal decided to give the little scholar a chance.

Soon realizing that his school did not have the necessary tools to teach blind children, the principal advised the parents to send the boys to a school for the blind. Here, they would have the opportunity for a better education. Shortly thereafter, the principal boarded a train with the two little boys and escorted them to the distant Illinois School for the Blind. The Bolotin family was so poor that the parents could not afford to visit the children. They did not see one another until graduation–nine years later. Although graduation from the school was usually at age 16, 14-year-old Jacob became valedictorian of his class.

Despite his excellent education and superb blind skills, on returning home, Jacob could not find work. Accompanied only by a wooden cane, he searched the city of Chicago. No one would hire him. After many months of tramping about the city, Jacob became an excellent traveler. Designing a mental map of the various neighborhoods, memorizing route hazards, and learning all the streetcar destinations, he rarely became lost. Jacob’s orientation and mobility techniques proved to be invaluable when he finally found a job as a door-to-door salesman.

First pedaling matches at four cents a box, the young entrepreneur moved on to selling a variety of brushes, from which he could make more money. Although he disliked what he was doing, Jacob needed the money–both to help support the Bolotin family and to further his education. Working twelve hours a day, he finally had enough money to attend a brief training program of what appears to have been massage therapy. Jacob had thought this training would lead to a career in the healing arts. Recognizing that the poorly taught course was inadequate, he set his sights on going to medical school instead. In order to pay for medical school, Jacob had to find a better way to earn money. Hearing about a company that needed salesman to sell newly-designed typewriters in commercial settings, Jacob applied for a job. He had excellent typing skills, which would enable him to show potential customers how to use a typewriter. The owner of the company was ready to hire him. Then, noticing Jacob’s cane, he realized that he was blind. Jacob persuaded the boss to hire him on a trial basis, and he worked for one month without pay. His ability to demonstrate the benefits of using a typewriter, his smooth sales pitches, and his knowledge of the city gave Jacob an advantage that put him on a par with his sighted competitors. Eventually, the president offered Jacob one of the highest salaries ever paid at the typewriter company.

Jacob found a medical school that taught courses from 7 to 10 at night. By working during the day and attending school at night, he would have enough money to pay for the first year. After some initial hassles from the administration, he was allowed to enroll. Toward the end of his first year, the state withdrew accreditation, and the medical school closed its doors. It took Jacob another four years to earn enough money to begin his medical education again.

Returning to the typewriter company, Jacob renegotiated with its president. His contract gave him sole rights to sell typewriters in areas outside of Chicago. At the end of four years, Jacob had sold typewriters in every state of the Union. At last, earning enough money to pay for his tuition, Jacob, now 20, became a full-time student at a prestigious medical school in Chicago.

At medical school, Jacob developed new techniques to access information. For example, in his anatomy course, the class mascot, Elmo the skeleton, taught the young medical student everything he needed to know about human bones. While the other students were dissecting cadavers, Jacob molded clay parts of internal organs–placing them accurately into a clay human body. He received an “A” for the course.

However, Jacob began falling behind. He could not find appropriate readers to help him access the necessary medical information from the print textbooks. A fellow student, named Hermie, approached him. He too was having trouble with his courses. A recent immigrant from Poland, Hermie, although he could read English, could not comprehend the difficult medical terms. He proposed that they help each other. Jacob agreed. After classes, the two students retired to the back room of a saloon owned by Hermie. Here, they studied for many hours every night. While Jacob interpreted the medical terms, Hermie read the text aloud. They worked together for four years, became best friends, and graduated from medical school with honors.

Dr. Jacob Bolotin was 24 years old when he began to work with patients. His remarkable memory and his use of senses other than sight helped him become an extraordinary physician. He had total recall of his patients and their ailments. No matter how long between visits, Dr. Bolotin had an uncanny way of identifying and diagnosing patients by their voices, their walk, and even their smell. With his sensitive touch, he measured the temperatures and pulses of patients as accurately as if he had relied on a thermometer or watch. Placing his ear to the patient’s chest or probing gently with his fingers, he was often able to pick up heart problems or chest lesions that his colleagues had missed. These techniques allowed him to become one of the foremost heart and lung specialists in the country.

We learn how Bolotin, blessed with high intelligence and enormous drive, manages to overcome almost impossible challenges. Moreover, he earns the respect of those who had tried to place barriers in his way. Ironically, Dr. Bolotin, a specialist in cardiology, having saved the lives of innumerable patients, was unable to save his own. Twelve years after receiving his degree from medical school, Jacob Bolotin died of heart complications. Over 5,000 people attended the beloved doctor’s funeral.

The renowned physician’s memory lives on through “The Dr. Jacob Bolotin Award.” Administered annually by the National Federation of the Blind, the award is given to blind people or organizations judged to have made a significant impact within the blind community.

The $10,000 Dive

by Carroll E. “Shorty” Cutting (as told to John J. Lesjack), Santa Rosa, California

There’s plenty of work available. The job is to convince the other fellow that a blind person can do it.–Bert Cutting

During the Korean War, Mom was already doing laundry for five of us–Granny, Dad, Malin and me–when my sister Maggie and her two little boys came to live at our house in Mattoon, Illinois. “I’m tired of using a wash board,” Mom told Dad. “Put the engine back in my washing machine!”

Dad said he needed the engine to power his air compressor for the salvage job he had coming up. He heard Lowell Thomas, a famous news broadcaster, announce that a barge with 150 new cars aboard had sunk near Golconda and that a St. Louis salvage company had tried twice but couldn’t find the cars. Dad had created his own diving apparatus and helmet when he dove for mussel shells that he sold to button factories. Once buttons were being made of plastic, and the button factories were out of business, Dad got calls to salvage stuff from fresh water all over southeastern Illinois.

Mom argued, “You could put the engine back for wash day and take it out when you need to make a dive. You’ve taken your car engine apart and put it back together. How hard could it be to replace my old Maytag engine?”

Dad came back with, “I need to be ready to roll. Tell you what–if you’ll hold off until I finish this next job, I’ll buy you a brand new washing machine!”

“One that rinses clothes?” Mom asked.

“Yes,” Dad said. “But the job will be in Golconda. Granny, Shorty and I will be there all summer.”

Who’s going to take care of Malin and Maggie’s two boys?”

“You are,” Dad said.

After the Strickland Construction Company called, Tom Strickland and his father, Pappy, and Pappy’s Seeing Eye dog, Nipper, visited our house. Pappy had been blinded on a job eight years ago. Dad had been blind since age 15 from typhoid fever. Mom had been blind since birth. The Stricklands signed Dad up as their diver and signed me on as a “back-up diver” for Dad.

Dad had been making and selling brooms–25 cents each, guaranteed for a year–but he easily gave up the lesser job for a better-paying one.

In the middle of June, 1952, Dad stepped off the third deck of Barge #110 and dropped into the Ohio River. He surfaced and held the edge of the barge. Then I slipped his diving helmet over his head and onto his shoulders, and he went to work. Dad’s job was to attach a load-line to a car, loosen the chains that secured the car to the deck, and signal that a car was ready. Tom Strickland would use block and tackle and winch to pull the car off the deck and onto a smaller barge.

Barge #110 had been marinating on the river bottom for six months along with 150 new Chrysler products, 50 of which slid off before the triple-decker barge sank. The water level was now below the top deck.

Six months previously, the St. Louis company had had trouble with the swollen river. Despite the use of the latest scientific marine equipment, a well-known hard-hat diver, and two big tugboats, they found nothing. A month later, the same company came back with 2 different divers and a large crane and brought up only one damaged car. The barge’s disappointed insurance company paid almost $50,000 and ordered the St. Louis crew off the work site.

Dad sent up four cars his first day. He put 26 cars ashore during his first week. By the middle of September, he had raised 93 cars. Dad pumped the mud, sand and silt from the hold, and the barge floated.

I never did any diving. All I did was help Dad into his diving helmet, secure his weighted vest, his life line, and operate the gasoline powered engine that kept the air flowing down to Dad’s windowless helmet. He was in water 35 feet deep for 5 to 8 hours a day. At the end of each day, Dad took my arm, and I led him back to the little house boat where Granny had dinner waiting.

Granny cooked over a little metal stove with a wood fire and made the best roast chicken dinners I’ve ever eaten. In the evenings, we often sat in the door way of the houseboat and enjoyed a warm breeze and quiet talks. On extremely warm nights, Dad and I swam in the river to cool off. Except for reporters coming around, I never had a better summer.

One reporter asked Tom Strickland about hiring a blind diver and Tom said, “Sunlight penetrates river water about 2 inches. After that, you’ve got dirt, sand and silt. In the depths of the river, the blind have an almost equal ability to that of a person with normal vision.”

Dad came close to not finishing the job when he cut his hands and feet on broken glass scattered about the deck. However, Granny doctored the cuts with her home remedies and bandaged him up. He never missed a day of work.

We came closest to losing Dad when he misjudged the distance between cars in the deep water and nearly got swept away by the power of the current but he grabbed an “I” beam, and held on until we could pull him up.

The afternoon he got paid, I drove Dad over to a phone in Golconda. I had a “hardship driver’s license” which meant I could drive if Mom or Dad were in the car. He called Mom and I heard him laugh and say, “Yeah! Ten thousand dollars! I’ll buy one of the cars and have Marguerite drive us to California to see the kids. You’ll get to hold Harry’s new daughter. I’ll walk Evelyn down the aisle … Yes, it will be our first real vacation … Of course I’m getting you the new washing machine, Honey! … The surprise is that you are getting a new dryer, too …”

I think both of my parents were crying then.

When I was growing up, I never marveled at how much Dad could do–roofed his own house; typed 120 words a minute; roller skated; taught his grandchildren to drive his tractor; used a gas powered chain saw; sheared sheep; the list is endless. I didn’t understand the fuss over his abilities: “Of course he could do those things,” I thought. He was my dad. Funny how people show their feelings.

Dad’s uniqueness was recognized in 1945, when he was interviewed on an episode of Ripley’s BELIEVE IT OR NOT radio show called “Unusual Jobs.” His achievements were acknowledged with an appearance on the Chicago-based TV talk show, WELCOME, TRAVELERS. And he was honored for his pioneer work in diving by being inducted into the Diving Heritage Hall of Fame (posthumously, of course) in 2008. But it makes me sad that no one told him he was brave or good. No one told him they would look after him and yet, when interviewed about his ability to provide for his mother, wife and six children, Dad said simply, “I am most fortunate.” His statement was printed in newspapers across the nation.

Carroll “Shorty” Cutting and John J. Lesjack were in the Navy together aboard the USS Lipan (ATF 85) fleet tug in 1956.

Of Internships and Independence

by Allison Nastoff, Brookfield, Wisconsin

I have heard of internships being called “classrooms without walls,” since they are out in the community and provide the opportunity to learn through practical experience instead of the theoretical (and in my opinion, boring) approach in traditional classes.

That’s why upon learning, in my freshman year of college, that an internship would be required after my junior year, I didn’t know if I could wait that long.

Before I knew it, junior year had arrived, and it was time to start applying for internships. Little did I know, however, that the process of applying for internships would also be a “classroom without walls”–and a very stressful, frustrating, but ultimately, rewarding class at that.

I should mention that before entering this “class,” I had made a vow to myself that I was going to do everything independently. Generally, I have nothing against asking for help in other areas of life, but I felt that internships were different. Given that I have heard there is still a 70 percent unemployment rate for blind people, what would employers think if they found out I couldn’t navigate their website independently or if it is apparent that someone else wrote my resume? Asking for help certainly wouldn’t be showing my appreciation for teachers all through school who never gave me easier assignments than the rest of the class simply because I was blind.

So with that in mind, I went to the career center to learn how to write a resume. I composed one that same afternoon. I let a sighted person give me suggestions about how to format it to look nicer, but she did not take control of the mouse and make these changes for me. She walked me through how to do it by myself on the keyboard using the JAWS screen reader.

Once my resume was done, I had another hour free before an evening class, plenty of time (I thought) to apply to READER’S DIGEST, which I subscribe to in braille. I was delighted to find they had an office in my area looking for interns. But when all was said and done, it ended up taking five hours.

On the first attempt, I only got as far as entering my name into the first form field. When I hit “tab” to go to the next field, JAWS didn’t say anything. When I tried using “down arrow” and then going back to the top of the page, JAWS merely repeated the prompt for the first field. I had no idea where I was and decided to start over. On the second attempt, I successfully completed the first section, only to realize it was time for me to get to class. The section I completed had not been saved, as I had thought it would be after I entered my email address. On the third attempt, the computer kicked me off the site and shut itself down after completing the first section. On the fourth attempt, I got to the final step, uploading my writing samples, only to find myself in some Flash movie thing where JAWS didn’t work. When I tried to close out of it and try again later, it closed out the whole application. Again, nothing was saved!

By this point, I was so frustrated that I was about ready to cut my losses. I didn’t touch the application again for a couple of weeks. Then I remembered that in school, giving up was never an option, and it isn’t a good habit to start in life either. But when I still couldn’t figure out how to upload my writing samples, I realized I had no choice but to ask for help. Though I couldn’t enjoy the satisfaction of total independence as I had hoped, the application was finally submitted.

Shortly thereafter, I received a generic email from READER’S DIGEST which asked about the requirements to receive internship credit for my college and if there was anything else I felt they should know. This was when I decided it would be appropriate to mention that I was blind, but felt I could perform the duties of the internship with just a few accommodations which I listed. Three days later, I received a call from a lady who explained that the internship duties for the office in my area required working with reader-submitted content which is often handwritten and includes photos. Therefore, she didn’t think I would get a quality internship experience with them. I have dealt with people whose tone announced clearly that they just didn’t want the bother of accommodating a blind person, but this lady didn’t seem like that kind of person. She sounded polite and genuine, so I decided not to argue with her. But that meant I had to resume the application process once again.

Next, I decided to act on the recommendation of a favorite professor of mine and apply for an internship in the governor’s office. But once again, I did not want to ask for help when the application was a PDF file that I could not fill in using Microsoft Word. I didn’t want to contact the governor’s office about this problem, fearing that doing so would send a first impression of incompetence before they even saw my application, but I certainly didn’t like the idea of printing it and having someone fill it in for me.

Should I just cut my losses with this internship, too? “No,” the person who helped with my resume said, “I would email the office. You cannot be the only one having issues with the application.” So I swallowed my pride and sent an email. A couple of weeks later, I received an application converted to Microsoft Word, which I was able to fill in without another hitch. I knew that this office did not find me incompetent when less than a week after submitting the application, I was offered an interview and was officially accepted three days after that!

Independence is a wonderful goal to strive for whenever possible, especially as blind people in a world where sighted people often don’t realize how capable we are. But this unofficial, self-directed pre-requisite course in “Applying for Internships” taught me valuable lessons that I hope will save future blind internship seekers from having to experience the frustration and self-doubt that I did.

A Declaration of Independence

by Susan Toland, Philadelphia, Pennsylvania

It is no coincidence that I now live only a few blocks from Independence Hall in Philadelphia. When I was a toddler, I was determined to do everything by myself, so my grandfather dubbed me “the Declaration of Independence.” The name still suits me. To appreciate this, you need to know that I am legally blind. That means that I have minimal sight in one eye and none in the other, and no depth perception. I get around without the assistance of a dog guide or a white cane; however, I can’t read street signs or facial expressions, and I hold printed matter inches from my eyes to read it. So you will be relieved to learn that the state of Pennsylvania, in its wisdom, will not grant me a driver’s license.

From 1956 to 2007, my family and I lived a suburban life within the city limits, in the Torresdale section of Northeast Philadelphia. A car was required for everything, and walking was looked on with some suspicion.

I returned from college in the Midwest in 1973 to find myself drawn to all that Philadelphia’s Center City neighborhood had to offer–galleries, theaters, libraries, universities–and the people who animate them. The challenge was to find my way into and around this new landscape alone. My parents prepared me well for this. My mother, forward-thinking woman that she was, made sure that I learned how to take the Route 66 trackless trolley and the Market-Frankford subway line into town and memorized the underground stops. My Dad explained the genius of Thomas Holmes’s design for William Penn’s Greene Country Towne; laid out between the Schuylkill and Delaware Rivers, the logical grid of streets interspersed with refreshing leafy squares.

From shopping trips with Mother, I already knew how to find my way to the former Bonwit Teller’s at 17th and Chestnut Streets. For some time, I went everywhere starting at the clock embedded in the sidewalk there. I’d hear Mother’s directions in my ear, “Face 12. Now walk two blocks to your right …” This system worked, but became cumbersome and a little silly. I began to develop a personal geography of landmarks based on the width of certain streets, the distinctive shapes of specific buildings, and glimpses of trees in one of the squares. These became the shorthand that anchored my understanding of the city. That’s not to say I didn’t get hopelessly turned around or end up blocks from my destination. Discovery is often a hit or miss process.

Gradually, I became confident enough to venture into town in the evening. That meant that I had to develop a new lexicon of nighttime landmarks–the configuration of lights on the skyscrapers, the street lamps that defined a square as distinct from a street, the subtle changes in traffic noise, and the flow of headlights toward or away from me.

My low vision frustrated my efforts to find a full-time job for nearly ten years after graduation, but finally, I went to work at a Center City hospital. The daily trek to town allowed me to deepen my acquaintance with the city at my leisure. I grew to know it in every sort of weather. I learned first-hand about the frailty of public transportation, which is vulnerable to downed wires, slippery rails and transit strikes.

Though I might have envied the Center City dwellers that were impervious to these inconveniences, my life still revolved around my parents and our home in the Torresdale neighborhood, which Dad christened the “Center of the Universe.” I was a city girl at heart, but never imagined leaving home. After all, how could I abandon the “Center of the Universe?”

We lost Mother and Dad within ten months of each other. When they were gone, my family home became a house of ghosts and, without a car, my life there threatened to isolate me and keep me dependent on the kindness of willing relatives and friends.

Gradually, I began to see past my grief. Though my roots were in Torresdale, transplantation started to seem possible. Encouraged by my family, I lifted my head and looked south toward town. I knew that in Center City, I could manage food shopping and other errands on my own, and that I could go to a movie or concert at the last minute without being tied to train schedules. With mixed anxiety and hope, my advisors and I started visiting likely properties. When I walked into what is now my condo, I knew instantly that my future would be here in Old City, cradle of my own independence.

I love going out to the suburbs to visit my family and friends, but I’m always happy to come out of the Market East Station onto the familiar streets of my neighborhood, always glad to be home.

That’s Motivation

by Raymond Dickinson. Reprinted from DIALOGUE, Spring 1970

An interesting word commonly used in the helping professions, such as psychology, rehabilitation, and social work, and often in medicine, is “motivation.” It simply means the process of providing or trying to provide the handicapped person with a desire to be rehabilitated. This is usually done by the teacher or counselor but can be done by the individual himself.

Some years ago, a home teacher had a middle-aged student, Mrs. O’Malley, who had lost her sight a year before. She was born in Ireland and spoke with an Irish brogue. She indicated she liked to read and so took a course in Braille.

The process was slow: She didn’t work hard. However, she did learn the characters and could read slowly but without enthusiasm. The teacher had the library send her a collection of stories, hoping this would speed her up. A few weeks later, the teacher visited Mrs. O’Malley and found she had read only a few pages. Puzzled and frustrated, the teacher began to think the lady wasn’t very concerned about reading. When he next visited the library, he looked among books that might interest her in particular. He picked out a history of Ireland which looked readable and had it sent to her.

He was afraid to visit her soon, feeling she might berate him for sending her such a book or might give the whole venture up. After waiting three weeks, he saw her and discovered, to his amazement, she had read both volumes of the book twice. Hooray for the Irish! Motivation had worked. Now, Mrs. O’Malley could have done this for herself, but she didn’t know what was in the library.

Art Schaffer was a blind college student in his twenties. Everywhere he went he had a sighted guide. He was urged to learn cane travel, but resisted. He didn’t need mobility training, he said, and no effort on anybody’s part could change his mind.

One day, as he was leaving a class in philosophy, a young lady came up to him. “Mr. Schaffer,” she said, “I’m Irene Goldsmith and I’ve got a problem I think you can help me solve.”

Art was unaccustomed to being asked about other people’s problems, but inquired noncommittally, “What problem can I help with? I’ve got enough of my own.”

“Oh, it’s not really that hard,” the young lady said. “I’ve got a minor eye condition. The doctor put some medicine in my eyes and I can’t read ’til the treatment is over. May I sit in on your reading periods for this class?” Art agreed to her request.

For three weeks the same reader read to both Art and Irene, and she often walked home with him after reading periods. As might be expected, some mutual interest developed between them. One Wednesday, Art, on an emotional impulse, asked her for a Saturday night date. She accepted. When he arrived home, he realized a problem. They hadn’t talked about how they were to get together. He couldn’t ask her to pick him up and then go home with him afterwards. He just had to find a way to call for her, get her home, and then go home himself. He didn’t have enough money for all this by taxi.

He wished he had taken mobility training, but it was too late, now. He called two friends, Jack and Henry, and told them his problem. It amused them. “There is only one answer,” said Jack, and Henry continued, “You’ll just have to get there and back alone.” They agreed to see him next evening and help him decide what to do.

For two nights, they put Art through travel training. Their methods were not according to modern mobility techniques, but after concentrated instruction, Art called Irene, went on the date, had a good time, and got home safely. He said later the love affair didn’t end in marriage, but Irene rendered him a significant service. She had motivated him to learn independent travel. It was the hard way, but motivation was initiated.

I haven’t heard whether Art actually took strict mobility training later, but he is still going where he wants to alone. One doesn’t have to wait for an emergency to get what he needs to fulfill his greatest wishes. One must think out desires in relation to skills needed and then learn them. That’s motivation.

Some DIALOGUE readers are past the stage of love affairs, being safely married, and most weren’t born in Ireland, but the process of thinking wants through and establishing motivation is still possible.

EDITOR’S NOTE: Raymond Dickinson was Associate Editor of DIALOGUE during its first ten years of operation.

A Vision of In Between

by D. S. Sully, Wausau, Wisconsin

Being an addicted news junkie, I begin most days with a trip to the newspaper box. After retrieving the morning edition, I make a hasty retreat to my favorite La-Z-Boy. Lying on a nearby table are three magnifiers, each varying in intensity. One I use to scan the headlines. Another then becomes my tool for reading selected articles. Finally, if it is necessary to zero in on any of the miniscule classifieds, I turn to the tiniest, yet most powerful, of the three accommodating devices.

Anyone watching my newspaper antics would surely come to the conclusion that this guy really has “bad eyes” and wouldn’t be good for much without all that magnifier power in hand. However, if the observations continue, soon come the contradictions.

Once the paper is put down, my next move is generally outward bound. Perhaps I might mow the lawn, tend the garden, or just go for a bike ride. My transformation from one extreme to the other is likely to fall somewhere between confusing and confounding to the casual observer.

What I am describing results from a condition known as macular degeneration (MD). In my particular scenario, it is specifically termed Stargardt’s Disease. Diagnosed at age ten, being out of sight has become my daily routine. With an acuity rated at less than 20/200, I have been thrust into a category called low vision for almost half a century. However, low vision does not mean no vision, a distinction which lends itself to all kinds of predicaments.

From a technical standpoint, those of us with macular degeneration usually qualify as legally blind. In many ways, this is one of the most misleading of terms. To the general public, the word “blind” is normally construed in its extreme context, meaning totally blind. Even the advocacy organizations, which title themselves “of the blind and visually impaired” are often slanted toward a total loss of vision.

Accordingly, the MD crowd, with our residual vision, often feel a sense of “misfitting.” When we utilize ZoomText computer software, magnifiers, and close-ups, rather than white canes, dog guides, or braille, we are even sometimes criticized as being in denial of our conditions.

Unlike many disabilities, macular degeneration is not outwardly visible, and so it goes unperceived as an impairment. For those of us with MD, this creates a dilemma about whether to explain our visual situation or not. Losing sight of the world around you is nothing to brag about, nor is it something to be ashamed of. But it can become an incredibly personal and strategic issue, deciding just how much disclosure is necessary. Explaining your situation most always leads to confusion and perhaps even exclusion. Ironically, remaining discreet seems to bring the same result.

Describing what we can and cannot see because of macular degeneration seems to muddle the minds of many. Some maliciously label it as deception for anyone with a vision loss to act as if they are sighted. This contention only demonstrates a lack of understanding about the complex sense of eyesight shared by both the general population and many individuals within the blindness and visually impaired community.

Here is one case in point: Although people tend to describe their vision in terms of acuity (20/20 or 20/200), this assumes that central and peripheral vision are the same. Normally functioning eyes are so well synchronized that most people cannot understand what happens when the synchronization is incomplete. Individuals with tunnel vision, for example, are perceived as seeing a concise limited field. However, unless you have lived with MD, it is difficult to comprehend just what is seen solely through peripheral vision, which crosses over from left to right as well as both up and down. Because peripheral vision allows for a wide field of view, it can give a misleading impression. Just because we have a certain level of acuity doesn’t guarantee that we can see details of something where it happens to fall in our field of vision. So, for example, unless we are zeroing in on reading or writing, we may get around pretty well with an MD diagnosis. Does this mean we are blind? Disabled? Differently able? None of the above? From my personal experience, just posing these inquiries can raise considerable ire both inside and outside of the blindness community.

For varying reasons, macular degeneration generates both questions and criticisms. One of the most common inquisitions is “Why don’t you just get glasses?” On the other hand, within the disability community, sometimes criticisms materialize about the absence of white canes among some persons with MD. My personal response to this viewpoint has always been the same. “Which hand would I hold the cane with when mowing the lawn or shoveling the snow?” Though this may sound flippant, it is a serious response.

No, those of us with macular degeneration are not in denial of our situations. We have no choice but to take our visual limitations into account. It is not a matter of deception that we appear more private concerning what we can and cannot see. Instead of talking about it, we go about our lives making the best of residual vision. At times, this may translate into unconventional predicaments, yet we somehow persevere. Like others with vision losses, we are birds of a feather who flutter and fly by whatever means works best for us.

D. S. Sully is the author of GLIMPSE, a wiseacre anthology which chronicles the antics and antagonisms of being out of sight.

Librarian Analyzes Talking Book Selections

Condensed from a speech by Florence Grannis (Shropshire) and reprinted from DIALOGUE, Fall 1969

EDITOR’S NOTE: In the late 1960s, when DIALOGUE was less than ten years old, library service for blind and low vision readers in the United States left much to be desired. There were few books available, and for the most part, the titles being brailled or recorded did not reflect the choices of critics or bestseller lists. The article which follows is a no-holds-barred assessment of this situation, not by a consumer of the times, but by a librarian, whose pioneering work at the Iowa Library for the Blind would do much to correct the situation described here. Nevertheless, it is clear from these 45-year-old observations that consumers are at least as important as librarians in making sure that the “bad old days” of library service never return.

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If you believe that blind people cannot ride horses, swim, dance, or bowl, you will not put books about horseback riding, swimming, dancing, or bowling into braille, onto tape, or onto Talking Books.

All book selection is based on particular philosophy and by its very nature is censorship. If you are a parent choosing books for your children, you are likely to choose books that have the type of moral precepts you wish to inculcate in them. If you are a librarian or an educator, you will probably choose books that will help the children stretch their minds, give them a fondness for reading and give them a general background of knowledge. If you are a librarian for the blind, your book selection will reflect what you believe about blindness, about blind people, and about the role of the blind in society.

The following is a profile of Mr. Blind Reader according to the way the average book selector sees him: Age–over sixty; Education–limited; Financial status–poor, on welfare; Mobility–limited; Horizons (experience of the world)–limited; Vocabulary–limited; Employed–no; Religious–yes.

The library administrator, also, sees Mr. Blind Reader as ignorant, helpless, and inferior. Isn’t this why one administrator said, “We have to give service, but we don’t have to give good service.” This man was a first-rate administrator and directed an outstanding library for the sighted public, but his prejudiced beliefs concerning the blind shaped his library policies toward the blind reader. Improvement in the caliber of book selection for the blind, and indeed in all library services for the blind, can only be brought about by improved attitudes toward the blind.

It must be recognized that, given opportunity and proper training, the average blind person can hold the average job in the average place of business, can be independent and self-supporting; and it is vital for society, as well as for the individual, to bring about this status. It follows that if a blind person can tie his shoe (“isn’t that wonderful?”), he should read at the “shoe-tying” level.

There is evidence that attitudes about and libraries for the blind are improving. More and more regional libraries for the blind are headed by people with library school degrees and are beginning to get their fair share of their system’s budget. Yet, more education for both the seeing and sightless public is needed. It is no accident that library donators give over-abundant numbers of Bibles and that transcribers who will braille “naughty” books are extremely scarce.

It was early recognized that the reading needs of the blind have a wide scope. THE REPORT OF THE LIBRARIAN OF CONGRESS in 1932 stated, “The blind represent a cross-section of the sighted population since blindness is no respecter of persons or of occupations so that this group has for the most part the same literary tastes as the sighted. But the handicap of blindness emphasizes to the utmost the necessity of having a wide variety of literature available since reading is the greatest source of profitable and recreational occupation open to them.” These book selection policies will only be paper policies as long as the book selectors reflect paternalism and condescension in their inner emotions.

According to Francis R. St. John’s SURVEY OF LIBRARY SERVICE FOR THE BLIND, 1956, the blind book list was lacking in scientific, technical, and special categories of material when compared with standard lists. Even today, all of Freud’s works have been omitted from the Talking Book and braille collections, as has Darwin’s ORIGIN OF SPECIES. Today, libraries for the blind have a smaller percentage of books listed in standard book selection aids than they had at the time of the publication of St. John’s survey. The survey indicated that 42.72 percent of books listed in standard book aids were available in libraries for the blind. Today the figure is 21.2 percent.

In the 1966 Fiction Catalog, 69 books were single-starred for excellence and ten were double-starred for super-excellence. The regional libraries for the blind have 17 of the single-starred and six of the double-starred books; 23 out of 79. This excludes such books as Barth’s GILES GOAT-BOY, Graham Greene’s THE COMEDIANS, and Malamud’s THE FIXER.

Of 400 items checked in the 1966 SUPPLEMENT TO THE STANDARD CATALOG, 47 are in Talking Books and 15 are in braille. Only one-fourth of the 52 single- or double-starred books are on records. The 1967 HARDBOUND BEST SELLER LIST includes 19 books, with only seven in Talking Books and one in braille. Some of the exclusions are Kazan’s THE ARRANGEMENT, Wallace’s THE PLOT, Berne’s GAMES PEOPLE PLAY, and Edgar Cayce’s THE SLEEPING PROPHET.

More single- and double-starred books need to be included while more trivial books need to be excluded when selecting material for blind readers. Over-abundance of books such as DAYS OF GRASS by Christian Herald and FAIR IS THE MORNING by Loula Grace Erdman is typical. Erdman’s book is described in the following way: “In this pleasant, wholesome, yet realistic story, a young teacher in a rural school finds challenge and opportunity aplenty. It gives an excellent picture of the teaching profession.”

The point of this thesis is that book selectors are just people in their social frameworks as is everyone else, and as long as “the culture” says blind people are “different” and, in effect, less valuable and less able to participate and pay their way, these attitudes will come through, consciously or unconsciously, in book selection for them.

The recently formed Book Selection Committee is a step in the right direction. If independent blind persons and groups will vocalize their reading desires and needs to the librarians, they will have gone one step further. The blind can only arrive, however, when the attitudes about the blind and of the blind are transformed so that it is recognized that blindness is merely a characteristic like many others, that blind people cannot be stereotyped and that their hobby, vocational, and recreational reading needs are just the needs of the people.

Living with Low Vision – The Last Degree

by Ann Chiappetta, New Rochelle, New York

Ups and Downs

I’ve been living with progressive vision loss for almost 20 years, and the shock of diagnosis is no longer an issue. I’ve succeeded in attaining my personal and professional goals. Life is good–if only it were that simple.

The last few degrees of vision are leaving me. I try hard to adjust gracefully but I don’t always feel like I’m succeeding. I still get angry and still want to keep at least a little bit of vision, even a bit of light perception. I pray for it but I don’t really know if it will happen.

I have to be prepared for the worst–that one day, very soon, I won’t even be able to detect light. What will it be like? Will I need to start taking melatonin? Will my eyes still be pretty? Will I have to start wearing dark glasses all the time? I’m not sure what to expect, after all these years living life with five degrees of periphery. Now, with less than two degrees remaining, it feels like a time bomb–a constant pressure that has been significantly affecting my mind and spirit. It’s all I’ve been thinking about–I can’t seem to get away from it. I wake up, knowing there is less vision. There is no consoling me, no one knows what to say, and I don’t really express the fact that I’m petrified.

Coping With Less

Five years ago I woke up one day and realized I don’t see color anymore. A year after that, when I attempted to go out after dark, I began to get dizzy. Also during this time, I went ice skating and experienced vertigo on the ice. I attributed this to no longer being able to ground myself visually. I panicked every time I went out in the dark, never went ice skating again, and avoided all activities that made me feel unbalanced or dizzy. The retinal specialist confirmed that the optic nerves in both eyes were dying, and it would result in any number of side effects, including what I was experiencing.

When the instructor at dog guide school announced our night walk, I was a wreck. Was Verona going to be able to sense how scared I was? Would I screw it up by not being able to trust her? I envied the “totals” as they never felt the vertigo I did.

When I left the van for our night walk, the instructor told me to relax and follow my dog. The first block was tense. When we turned the corner, got into a groove, and went into town, around the block, and back to the van without incident, I realized I was hardly breathing. My hand was cramped from gripping the harness handle so hard. I was so relieved when it was over that I almost cried.

Since then, I’ve tested myself, knowing Verona would never put us at risk, no matter what time of day or night. But the vertigo hasn’t gone away, even though the anxiety is much more manageable.

Controlled Descent

What helps is the action of my hands on the keyboard, writing down the guts of what’s really going on in my head. I guess I’m grieving again, experiencing, again, the complicated grief attributed to progressive vision loss, just like in the beginning.

My kids and husband say they forget I’m blind because I do so well. Those comments aren’t comforting because they lull all of us into a false sense of security. When I do need help, trip over something that shouldn’t be there, or ask for the jelly jar to stay in the same place in the fridge, I meet resistance. This results in my feeling as if they are still in denial. I have to keep struggling to live in the land of the sighted, even in my own home.

I’m not asking for blind Utopia, just a bit more understanding and accommodation. I know I live with three other people who also want to do things in the most logical way, but sometimes we are at cross purposes when it comes to how we want things in our home, like the jelly jar.

I have never felt the need to control my environment as strongly as I now do; it makes sense psychologically, though. I can’t control what’s happening with my vision, but I can control certain aspects of my own little piece of the universe. I think this is what will help me get through the final plunge–the last degree.

Some Thoughts on Braille from the New NLS Director

Frank Kurt Cylke, who directed NLS, the National Library Service for the Blind and Physically Handicapped, for most of the last 40 years, was essentially a career librarian. When he got the NLS job in 1973, he had worked for several years at the Library of Congress where the NLS ranks as one small division in an extensive array of networks and collections. When I asked Karen A. Keninger, the new NLS Director, about the career path which recently moved her into Cylke’s former office at 1291 Taylor Street in Washington, she said that her connection to libraries had an early beginning and a lasting intensity.

“The library has been extremely important to me all of my life. I am a blind person, and I’ve used the library since there was a library to use in Iowa where I grew up. I love libraries.

“I began working at the Iowa Department for the Blind, not in the library but in the Vocational Rehabilitation Section. Then the position of director in the library came open–and I was very familiar with the library–the director of the agency sent me up there as interim director. I loved it so much that I applied and was hired for that position. So that’s basically how I got into the library field.”

Keninger is the first consumer of braille and Talking Books to serve as Director of NLS. When she picked up the phone to join me for a DIALOGUE interview on July 12, she had been in her new role for about four months–not much time for finished accomplishments at the measured pace of federal projects, but plenty of time to give serious thought to the challenge which lies ahead of her.

As a consumer of accessible reading of many kinds, Keninger has endorsed NLS plans to develop an application which will eventually turn Apple portable devices into Talking Book players for eligible readers. I asked her if she anticipates a danger that Congress might one day remove or at least reduce tax dollars for the special NLS digital Talking Book player.

“Way more than half of the people that we serve do not have those iPhones in their hands. The people who have iPhones tend to be younger; but the people who lose their vision in later age are not going to be using iPhones–at least not now. They may in the next 20 or 30 years. Today’s population certainly does not and will not, and they need the digital Talking Book machine.”

I asked her what kind of commitment she believes NLS should make to braille readers. “NLS needs to make a big commitment to braille readers. I believe that we need to completely take a look at our braille program as it stands now, increase the quantity of materials and perhaps the scope. Also, I think there are some technological advances coming in the next several years that NLS needs to stay right up with, to play a major role in making braille as available to everyone in this new digital age as it can possibly be.

“I know that there’s been a decrease in braille readership over the past 40 years for a number of reasons. But without braille, blind people have no opportunity to be literate–I don’t believe that audio covers literacy. It does many, many things, but it is not a literacy medium.

“We’ll be doing some discussion with all kinds of stakeholders in the field of braille. I want to hold a symposium–a gathering of some sort–to look at that from all corners of the braille world some time within the next year. To take a real look at where braille is going and how braille can be revived as a literacy medium so that blind people of all ages–but especially younger people who are more likely to use it–can thoroughly have access to it in ways that they are willing to use.”

One of the challenges of Keninger’s new position is the complex budget-making process. I asked her if she had ever experienced anything quite like a Congressional budget hearing before moving from Iowa to Washington, DC, earlier this year.

“It is going to be challenging, I will grant you that. There have been many challenges in my life, but this one is going to be a big one … Congress did generously fund the conversion to the digital Talking Book program, and that was certainly a very positive thing. Aside from the fact that we did lose the last year of funding on the Talking Book conversion, our budget has remained relatively stable, and we expect a flat budget this year. That’s better than what I experienced in Iowa, which was about a 30 to 35% decrease in our funding over the three years that I was director there.”

For most of its 80-year history, NLS has represented just about the only source of accessible recreational reading available to most legally blind people in the United States. Now, low-cost sources such as Bookshare and Learning Ally, as well as readily accessible commercial sources such as Audible, Amazon, and Blio are within reach of many NLS patrons. Might an awareness of these charitable and commercial resources eventually tempt Congress to reduce funding for NLS?

“The books that are being produced by Bookshare are a totally different technology than what NLS does. And the books that are available in audio formats from other sources these days, Audible and what not, are expensive to do the kind of reading that I do if you have to buy all the books. Although I could afford it, many people could not.

“I think that there’s a place for each thing; and the place for NLS is to be the basic library service accessible to everyone who is qualified–regardless of their technology abilities, regardless of their income or socioeconomic level, regardless of their age. And that’s something that a commercial organization cannot do, that’s something that only a public library can do.”

The Summer issue of DIALOGUE quoted some views about the importance of consumer input from a pioneer librarian in the blindness field, Florence Grannis (Shropshire). I asked Ms. Keninger for her views.

“I believe that we should be working toward the goals of our consumers–I’m one of the consumers, so I want input as well from a personal perspective. I believe that NLS has, at times, been less responsive to consumer input than I want it to be. My goal is to have a very open dialogue with consumers all of the time. We’re going to be doing a consumer survey this fall–a big one–to find out what we can. My goal is to have as much discussion with people as possible, to have open forums. I had one at each of the consumer conventions and got some very good input from people.

“The Collection Development Advisory Group did not meet this past year; we did some other things that we thought might substitute at some level. But I know it’s important to get consumer feedback, and it’s something I am extremely committed to getting. I’m freely giving people access to my email. If you want something, let me know. My staff is here also, but I’m available, and I want to hear what people have to say.”

Director Keninger said she has five defined goals as she begins her tenure at NLS:

  1. “To maintain the quality of the products that we produce or have produced by our contractors.
  2. “To expand the scope and the quantity of materials available to our patrons through NLS; I believe that with more opportunities for technology, for cooperation with commercial audio producers, for a different way of producing braille, we can make a wider variety and a greater quantity of materials for our patrons.
  3. “To leverage technology to make the reading and delivery systems better for our consumers. That means looking at BARD (the Braille and Audio Reading Downloads website) and making changes there as we can to improve it. That means the iPhone app. That means, look at the digital player and see what enhancements are next for that. I would retire happy if I were able (and I think it can be done) to provide a low-cost, easy-to-maintain, refreshable braille device to anybody who wants one through the NLS system the way we provide the Talking Book machines. That goal is down the road, because the technology that it would require has yet to be developed. But I believe that it’s coming. That’s an extremely important goal of mine over the next few years.
  4. “To increase the visibility of and access to braille, to raise awareness of the value of braille and to look at the NLS program in terms of our collection development and the way that we produce braille that people want and need. Rather than making internal decisions, I want customer feedback. The teacher who is working with a blind adult learning braille, what do they need? A teacher working with a small child learning braille, what do they need? Do they need it in Grade One, uncontracted, or contracted–those kinds of issues we need to look at.
  5. “To expand the readership–people who are eligible to use our services but who are unaware of them or don’t know that we can meet their needs.”

To contact NLS Director Karen A. Keninger, the direct email address is kken@loc.gov. The NLS mailing address is 1291 Taylor Street NW, Washington DC 20011.

Taking Your Dreams Out of the Closet

by Amy L. Bovaird, Girard, Pennsylvania

Thunk! Huh? I moved my long white cane sideways.

Thunk! In the opposite direction.

Thunk! Backwards.

Thunk! I could barely move, but I stepped forward.

Bam! My head smacked into something flat and hard.

Out of habit, I reached up to feel for blood. As I did that, I knocked something else over. It sounded like a tin can. I turned a full circle in place–terribly cramped quarters. My hand brushed something bristly.

I bumped into another object–a plastic spray bottle? I found the nozzle and took a whiff. Ammonia! When I stepped on something soft and squishy, I found a long, thin and smooth object projected out of a curved base. I followed it to the floor. It felt suspiciously like … a mop and bucket.

Wait a minute. This is not where I want to go. This is a walk-in janitor’s closet!

You might think it odd I found myself feeling my way around an assortment of custodial supplies in a dark closet, but for me, a woman losing her vision from retinitis pigmentosa, these occasional side adventures are a regular part of life when I’m outside my familiar environment. Normally, I don’t mind.

This time, I happened to be at a writers’ conference. Just outside this closet stood a well-known speaker in the Christian publishing field giving a workshop. Conference attendees were gleaning all they could to embark on their own writing careers. I could hear the rise and fall of his voice and people laughing on the other side of the door. I certainly hoped they weren’t laughing at me!

How did I wander into the closet in the first place? I signed up to speak to a literary agent and took a wrong door. One of the perks to attendees at these conferences is speaking to editors, agents and publishers. Writers looking to match their talents to industry needs quietly slipped in and out of the scheduled presentations to pitch their ideas.

The key word was “quietly.” I didn’t do much quietly. And now, I had a dilemma. I could stay put until the session ended so I wouldn’t further embarrass myself. But then I’d miss the appointment with the agent. Worse, the group might pity me.

I could burst out of the closet and say, “Wrong room. The agent is not here,” and exit through the other door. Or I could say, “Surprise! Avon calling!” How would I handle this situation with dignity?

A minute later, I found my courage and stepped back into the room. The speaker halted, and a sea of eyes riveted on me. I directed my loveliest smile at everyone and waved good-bye. “Thank you,” I mouthed to the speaker, giving him a thumbs-up for his talk and exited.

I took a deep breath and made my way to the main forum. A conference organizer scuttled over. “May I help you?”

“The Seymour Agency, please?”

She guided me to the table herself. I held out my hand to greet the agent. She had a brisk, firm grip. After sitting down, I launched into my one-minute elevator speech about FADING LIGHT, the memoir I dared hope to peddle.

The frequent mishaps my retinitis pigmentosa caused stirred up laughter and plopped me into the lives of other aspiring writers. Friendships developed rapidly. Standing in line for our meal that first day, I accidentally hit the legs of the woman ahead of me with my cane. She wasn’t angry, though, and one thing led to another. She asked me how long I’d been writing.

“Professionally, a couple of months. This is a career change,” I declared.

“Me, too. Welcome to the club.”

That night, I faced the winter coat fiasco. Exhausted, I made my way to the coat rack, found my coat and slung it over my shoulder–too tired to put it on. A new friend drove me across town to my hotel room.

The next morning, I got ready to leave and slipped into my coat. I stepped over to the dresser to pick up my purse–and almost tripped. The coat hung down to my ankles. The color also seemed darker and the texture, smoother. It must be inside out. I reversed it and flipped the hood up; the tip came to my nose. I ducked over to the mirror. A dwarf looked back at me. This is not my coat! Later I discovered that the woman it belonged to towered a foot higher and was fifty pounds heavier than I am.

I finished off the conference with a flood–literally–of monumental proportions. At the refreshment table, I placed my plastic cup under the nozzle of a large iced tea container and flipped the lever forward. Unbeknownst to me, my cup had a hole in the bottom. A cascade of sweet tea shot through the cup and gushed with the unchecked power of Niagara Falls over the edge of the table. Soon, several blurry bodies speeded over to organize a lined flood patrol, passing down paper towels.

I had the time of my life cleaning up the mess. While we worked, we shared common hopes for our writing, putting the bounce in our words, finding markets, and encouragement in our similar walks of life–although mine would be with a cane.

The last morning, I tapped the shoulder of a woman from one of my sessions. She stood out to me because she talked about her hearing disability, yet had participated in a lively discussion. After we introduced ourselves, she snapped her fingers. “I know who you are.” She giggled. “You pranced out of the closet, gave us that dazzling smile and left the room. It took us all by surprise, but we had a good laugh.”

“Yep, that’s me all right.”

We talked a little about our goals and the challenges we faced. She mused, “Confidence has little to do with what you can see or hear. It has everything to do with how you feel about who you are.”

I agree. Confidence means believing in your talents, picking up your two feet and taking your dreams out of the closet.