For illiterate adults, daily life is an uphill battle

By Carolyn Szczepanski

It was decades ago that Fred Dake was banished to the back of the class, but the shy 51-year-old with long, thinning hair and soft eyes, clearly remembers the impatient teacher who sentenced him to a life of hidden humiliation.

"Basically, I got shoved into the corner," he says, "And I stayed there ever since."

From an early age, Dake knew he struggled with reading. While the other kids seemed to easily crack the code of tiny geometric patterns that filled textbooks and worksheets, reading and writing were confusing skills that Dake found nearly impossible to piece together.

"Trying to get it from my head to my eyes to my hand, I just couldn't do it," he says.

But Dake, already embittered by his treatment from teachers and embarrassed at the thought of his peers teasing him, hid his struggles and got as far as his senior year at East High School before anyone bothered to tell him he had a reading problem. But at that point, Dake says in a tone of defeated resentment, it was too late. Having been shut out by a seemingly apathetic educational system and having watched even his parents throw up their hands in frustration, Dake went into his adult life with a secret that bound him to a cycle of public deceit and private dependence.

"I've maintained a lot of things," he says slowly. "I didn't let anybody know. I let them all think that I do know how to read. I only let them guess."

He learned to make his way around town by memorizing businesses as landmarks and cultivating a keen sense of direction. He disregarded the suspicious looks from employers when he told them he needed to take job applications home. He got in the habit of bringing mail that looked important to his parents to decipher and tried to act casual about asking the pharmacist for real good directions on how to take his prescriptions.

But one thing he never got used to was swallowing the humiliation.

"I was even going with a young lady once and she turned around and said, 'I don't want my daughter growing up around somebody who doesn't know how to read,' and she broke it off," he says. "So, I kind of more or less stay to myself."

Two year ago, however, Dake decided to seek help. He called the school board. The school board referred him to the Drake Adult Literacy Center. And suddenly, in a program with 70 other students, Dake found a sense of community. Now, Dake isn't only starting to crack the code of the written word, but he's come to understand that his reading deficiency isn't because he's dumb, but because he has a disability. One that millions of Americans struggle with in silence.

"You just assume that everyone knows how to read," says Anne Murr, coordinator for Drake's Adult Literacy Center. "But that's the wrong assumption."

Marlene Schultz's friends make false assumptions about her volunteer work. Over the past year, the English teacher turned technical writer has spent dozens of hours tucked into a cozy blue cubicle in the basement of the Drake University Education building. But, when she tells people she's teaching reading, they jump to the wrong conclusion.

"Everyone thinks I'm teaching foreign people, people learning English as a second language," she says. "But, no, they grew up here, they went through American schools. It's hard for people to understand that you can get all the way through school, even graduate from school, and not know how to read."

But, as Schultz has learned during her time as a volunteer with the Adult Literacy Center, that's the case for millions of Americans. Although the country is mired in what many describe as a crisis in education, the national spotlight has remained on the plight of current students. Virtually forgotten are the countless adults who are still suffering decades after the educational system failed them.
According to the 1992 National Adult Literacy Survey, more than 20 percent of the adult population, or more than 40 million Americans, read with such a low proficiency level that they were unable to total an entry on a deposit slip, locate the time and place of a meeting on a form, or identify specific information in a brief news article. Another 25 percent, or 50 million, reached only Level 2 proficiency, which also represented very limited literacy abilities. And, with nearly half the nation unable to read at "functional" levels, the state with a "Foundation in Education" is no exception to the troubling trend.

"They say we were 2 percent better than the national average, but still 38 percent couldn't read at functional levels," Murr says of Iowa. "That's appalling."

But, even as officials anxiously wait for the soon-to-be-released results of a another extensive survey conducted in 2003, Murr says the problem remains largely unrecognized and opportunities for adults are limited.

"People assume it's too late once you become an adult," she says. "And the resources devoted to adult basic education, compared to regular education, are pretty slim pickings."

Of course, the government doesn't completely wash its hands of a job only half done, and state community college systems are charged with making good on previously unfinished public education. The Iowa Department of Education receives $4 million in federal funding each year to operate Adult Basic Education programs, says IDE consultant Sally Schroeder, and last year those classes served approximately 16,000 residents, many of whom came in with a level of literacy that made it all but impossible to even balance a checkbook.

But, as Murr points out, that's just the tip of the iceberg. She sees that firsthand in the fact that the waiting list for the Drake program rarely falls below a dozen. She'd love to see the capacity grow to accommodate all interested students, but, although it was established in 1976 with a federal grant, that money ran out long ago and now the program is sustained solely by volunteers and private funding. Especially in tough economic times - like this year when major funding from the Dollar General Literacy Foundation dropped from $10,000 to $7,000 - the program depends on fundraisers, like the annual walkathon through the downtown skywalks this week, to get students the help they need.

But students point out that they're willing to wait because the Drake program is different than the standard tactics taught in community colleges, which may closely reflect the kind of schooling that proved unsuccessful in the first place. Just ask Larry Lehman; he tried learning to read at DMACC, but the classroom setting simply didn't make things stick.

That makes sense to Murr, who notes that there is still a misconception about illiteracy. It's not a matter of teaching third-grade skills all over again; it's a matter of addressing a neurological deficiency. Over the past 20 years, she says, science has shown that the one in five children who struggle with reading exhibit differences in brain physiology, not an apathy toward learning.

"Because this is a processing difference in the brain, it's not tied to intelligence," she explains. "People are able to understand and communicate verbally with proficiency, but when they see the written extension, it just doesn't compute. What they can't do is sound out words, which is something we take for granted. It's equivalent to someone never being able to walk. Once they are given this kind of therapy they start simulating that connection. But every step is an effort. With practice it's something that becomes more fluent, but it's still a tremendous effort."

An effort that Larry Lehman, a student at the literacy center, knows all too well.

When Lehman's two kids were growing up, the parent-child relationship was turned upside down. For countless nights Lehman couldn't read them a bedtime story. He couldn't help them with their homework as much as he wanted to. And years after the learning disabilities program at North High School couldn't unravel the written mystery, Lehman's children would sit on his lap, reading slowly so their father could listen and try to follow along.

But, while his family knew his struggle, Lehman says he had to bend the truth out in the working world: "I had to lie to make a living."

As a child, he learned that even simple jobs become daunting when words are out of reach. To earn the money for a bike, he delivered newspapers. But, although a simple task for most children, Lehman had to tote his father along to decode the list.

Later, when filling out applications, he could get through the name and address bit, but anything beyond the readily recognizable, memorized items, like references or medical history, were impossible. Although he often had family help him, that first hesitant step put him out of the running for countless jobs. That's not to say that everyone was unsympathetic, he says. The instructor at the barber school, for instance, would take him to a back office to read the assignments and sat next to him during tests to read the questions aloud. But that prospect, like so many others, didn't work out, and Lehman often found himself unemployed.

When that happened, he says with pride, he slapped sideboards on his pick-up truck and started his own junk hauling service. It was a makeshift operation - no advertising or record keeping, just word of mouth and the ever-present help of his wife in deciphering the addresses. And then, he says with a smile, he got lucky. With the help of his mom ("bless her heart") he got hired at a construction company where he stayed on - grinding, cleaning and painting - for 26 years.

But with manual labor, his only viable option and his health making such employment increasingly inadvisable, Lehman was forced to retire at age 53. It's a common story that characterized Dake's experience, as well: years of frustration and uncertainty ended prematurely by health limitations. But, while Lehman acknowledges he caught a lucky break, Dake is downright indignant at the way he was treated.

As a child he aspired to become an auto mechanic or conservation officer, he says, but those goals become fantasy when you don't know how to read. With any job, he says, he had to fight to prove he could make it. Once, when he was told outright that his illiteracy disqualified him, he got so frustrated he flat out told the employer that was discrimination and he wouldn't "put up with any of that crap."

"I know I could take a job, figure it out in a matter of, I'd say, six months to a year and run the job and get people motivated to do the work and everything," he says. "But they never give you a chance or an opportunity to prove it. It's always just been 'adios.'"

He resents the narrow conception of intelligence that kept him out of contention for so many positions. Murr agrees that there's a bias against individuals with kinesthetic, rather than verbal, endowments. Just look at how we perceive those college kids who play ball, but must be stupid because they can't write a paper, she says.

"There's some stuff that a hands-on guy like myself can show a college guy that could be a lot easier than written in some book," Dake says with the hint of a sly smile. "They all say, 'you've got to go by the book,' but you can take that book and throw out the window. I'll show you how it's supposed to be done. I said that to two college guys once; they didn't like that."

There is a story that haunts Lehman when he takes the medicines his wife sets out for him in a small container every morning.

Recently, he heard about a man whose daughter went into a seizure. While the father had the life-saving medicine in his hand, he couldn't read the label and nearly made a fatal mistake. Everyone can read numbers, Lehman points out, so the man identified the numeral four and, in that moment of panic, gave his daughter four pills. In fact, the prescription was directing the consumer to take one dose four times per day. The man's daughter, Lehman says solemnly, nearly died.

Janet Peterson, women's health coordinator for the Iowa Department of Public Health, says that low literacy has "huge implications" on society's collective health. In fact, a study from Georgetown University, she points out, concluded the financial implications amount to $73 billion ("That's with a b," she emphasizes) annually. And, health literacy isn't just a hot national topic, but one that was a focus of a women's health grant IDPH has been working on for several years.

"Navigating the healthcare system," Peterson points out, "requires multiple reading skills. Low literacy is often shameful and many don't disclose they have a reading problem. They may also be very anxious about going to the doctor, and rarely ask that doctor to clarify."

Dake says the embarrassment of going to the doctor can make a low proficiency reader sick to their stomach. Lehman can depend on his wife to come with him, but the one time he had to get a CAT scan and she wasn't able to accompany him, he had to swallow a little pride to get the form finished. He saved face, he points out, by not telling the attendant he couldn't read, but saying he was learning to read and just needed a little help. Dake says there is a hesitancy to enter an arena that, even for the highly literate, is a fortress of indecipherable language.

"Sometime I don't go to doctor, because it is embarrassing to sit down and fill out one of those forms and try to answer questions like that," he says. "They take big, long words when they could just use eyes, ears, throat, you know? It's hard, it's embarrassing."

Peterson says the medical community is starting to recognize that supposedly elementary educational material may be soaring over the heads of scores of needy patients. Health materials, she says, are beginning to take into consideration that a notable portion of patients, especially those on Medicaid, read at a fifth-grade level or lower. So, instead of creating brochures and handouts written at the current sixth-grade level, Peterson says, there is increasing discussion about producing information that includes more visuals and pictographs.

Lehman says that only makes sense. If prescription bottles can be made in Braille for the blind, why can't they be made pictorial for those with low literacy skills? He envisions stickers with images of moons and suns coupled with numbers and pictures to tell people when and how many doses to take. Dake, for one, acknowledges that he does ask the pharmacist about the medications he takes, but sometimes he accidentally "does the opposite with it."

Over the past four years, Lehman has become a word connoisseur. He sits and stares at STOP signs, creating as many words as he can with a mere four letters. He reads every word that pops up on television and, when driving around a city he's spent nearly six decades exploring, he often can't help but blurt out, "Whoa, I can read that!" to whoever's in the car.

But there are some words that Lehman never wants to encounter again. Words like "stupid" and "dumb."

Murr says that, in working with students, she's found that, even more than the practical limitations of literacy, it's the psychological implications that are the most devastating.

"Growing up I was always put on the stupid list, or the dumb list and a lot of times people didn't want to be around you," Lehman says. "You couldn't really correspond with other people, couldn't even read the newspaper. So when people want to talk about different things, you just do the best you could."

But hiding the truth required he be "tricky." If he had to order at a restaurant by himself, he'd pretend to scan the menu and guess at a meal. To fully participate in his church and deeply practice his faith he needed to read the Bible, so he got the full text on cassette tapes and listened intently at home. To go grocery shopping, he'd walk down every aisle, start to finish, matching up the items on the list his wife had given him. To get around town he'd ask for specific directions that included landmarks. But if somebody told him to turn at the blue house and that house just got repainted, he says only half-jokingly, he'd be lost.

And that fear of being lost and the accompanying sense of helplessness is scary, Lehman emphasizes. When his wife was in the hospital once, he remembers going to get a sandwich and the sense of panic that came with trying to navigate the daunting maze of identical corridors and rooms. But even worse than the fear is the loss of autonomy and personal dignity to do something as simple as to grab a snack. You can only shop at a snail's pace for so long or call a friend for directions, as Dake did for so many years, before it starts to erode your confidence.

"A lot of times I would call myself stupid, because that is the way I felt," Lehman admits. So whether it's knowing for a fact that he's coming home with all the right ingredients for shrimp cocktail or confidently escorting folks through the VA hospital where he volunteers, his burgeoning reading skills are slowly relieving Lehman of the former dependency that led others to label him "dumb."

But the fear of being teased remains a powerful deterrent to seeking help, Murr says. She has students who've never even told their spouses about their disability. Dake, knowing firsthand the dignity-swallowing symptoms, says he sees that silent paralysis everywhere he goes.

"There are so many people who hide it," he says. "A lot of them, I can see it in their eyes, because I know it's frustrating for them."

After a long day at work, a trip on the bus and a walk through the drizzly evening, Christina Hayes doesn't even touch the single-serving package of Cheez-Its she's brought as a snack.

At 35 years old, Hayes is a model student. She's always on time and ready to roll, her tutor Marlene Schultz says admiringly. She picks up right where she left off, even after a vacation from the twice-weekly lessons. Once, when the doors were locked, she even tracked down and convinced a skeptical security guard to let her in the building.

But, despite her eagerness to learn, Hayes was a child left behind during her days in school. Administrators didn't notice she was dyslexic; they just stuck her in special ed and let her slide. But last year, sick of her reading shortfalls and difficulties spelling, Hayes signed up for Drake's literacy program.

So after a day of chasing kids around at the downtown daycare where she works, Hayes recites short vowel sounds as Schultz points to the orange and green Styrofoam letters on the magnetic board. She goes through words Schultz sets out on small pieces of paper - volcanic, investment, snapdragon - syllable by syllable, gently pointing to each sound as it rolls, sometimes haltingly, off her tongue. She tilts her head to the side and looks quizzically at Schultz when she's stumped - transatlantic? - but, with a little help, she nails every one. No one, she says, tried to teach her like this before.

"Now I can tap the words out," she says. "Now it makes sense to me."

Now she's the one answering, instead of asking, questions at work, and doesn't need any help filling out the incident report forms when kids act up. She's got a ways to go - she's on level three of 12 - but says she's pretty dedicated. Not to mention pretty happy with the increased confidence.

Lehman has the same determination. If his glowing praise of the program isn't proof enough, his worn workbooks - their red color faded to orange, their covers ripped and taped together - certainly are. He's been at it for four years now, and he admits that, a lot of the time, it's tough.

"I'm working on two-syllable words," he says shaking his head. "Now that's hard; two-syllable words. And one part - the 'ang' and 'ing' and 'ong'? I never thought I was going to get it."

But they make it fun, he adds. There are spaces to draw pictures next to the different sounds and sometimes, he says with a mischievous smile, he gets lazy and cuts out magazine pictures to fill in the blanks. But that doesn't mean he's not learning. Like Hayes, he's now able to sound out unfamiliar words. In fact, just the other day he delighted himself when his wife was in the emergency room.

"The doctor comes walking in and it said Dr. Hoffman on his coat," he says, accentuating each sound to demonstrate how he decoded the name. "I never could sound things out before. It was really cool. Like police. Or spice. Or shrimp."

Of course, there are a lot of things Lehman does now that he never thought he would do, like travel to Washington to meet with legislators during a literacy conference or raise a good-natured ruckus at the state capitol with an Iowa disability group just last month.

"That was ooh-we," he says slapping his leg, a grin on his face. "We stormed the capitol. We had a podium and the rotunda was packed with people."

And during such trips Lehman gives policymakers his book: The Man That was Cheated (see sidebar). He made copies for the likes of Sen. Charles Grassley, but the original takes up 14 pages of a leather-bound journal. It's lucky that Lehman doesn't yet have a favorite author, because, once he fills up all the pages of the diary, he says facetiously, "I'm going to be my favorite author."

But, aside from his new identity as a writer, Lehman has also taken on a new distinction as a grandfather. One of the reasons he went back to school was because he was upset that he couldn't read to his grandkids. But that's different now.

"She had some problems reading and I'm a little higher than she was," he says of the blonde-haired second-grader perched on the couch across from him. "So I could help her with reading. We just read one story, didn't we Kayla? The one about Ma and Pa? In fact, it was in this book."

He thumbs through the workbook and stops on the familiar page, tilting it so Kayla can see. She nods and he smiles. After so many years of struggling, the title of the story could hardly be more appropriate: The Gift. CV

'The Man that was Cheated'
By Larry Lehman
(excerpt)

You cheated me. You did not teach me how to read so I was left behind. You left me behind. Why did you do that to me? At 57 years of not knowing how to read, would you like it? No!! So why did you do it to me? I hope you don't do this to someone else. Wake up and help the ones with a reading problem...

When I went to school I lost out on the reading part. They did not know how to teach me how to read so I was past over from grade to grade. Even when I went to barber school the teacher would read the assignments to me. Lots of times people would read things to me. When I got merryed my wife read things to me just like my mom and dad did. It was scary when I was by myself. I did not know how to go around from place to place. Even today sometimes I still get worry but I am working on my reading so I can do things on my own.

Learning to read is like a new toy and it does not need batteries and it does not brake and a lot of doors will open for you when you learn to read. It is fun to sit at a stop sign to see how many words you can make out of the word stop. I would like to take the time to thank the people that take the time to teach people how to read.

I was born with a learning disorder. With this disability I was put in the work steady program. It takes me longer to learn. I had a friend that would help me work on cars. That is how I learned how to work on cars. I will take words off the TV and I will try to sound them out. It is fun to me and I will try doing things on my own...

When I found someone to teach me how to read I was happy that someone took the time to teach me. I went to the school of education the same as the school of learning at one of the University in the town where I live. I like learning to read. I like the new things I can do. It is fun. I don't read that good at this time but I will someday because I'm working on it and I have a good teacher...

I have heard a lot of lessons for not knowing how to teach me. I would like to know the reasons why and what can be done about it. Can you tell me why I was cheated? I would like to know. It is not whining. It is hurting and mad. I have told you a lot of things about my life so you could get a better idea what I went through. Would you like to be called stupid? A lot of people call me stupid.

I'm not stupid. I just don't know how to read. I know how to do a lot of things but not how to read. If you didn't know how to read what would you do? How would you make a living? It would be hard. Would you lie to get a job? I had to so I could make a living. But when I learned how to read I won't have to lie anymore.

If you told me that I would be talking to people about learning to read I would tell you I could not do it. I allways was told that I could not do it because I was not smart enough. I like telling people about learning to read. I was ask to go to Washington D.C. for a new readers conference and Leadership for Literacy. If you would have told me I would be eating dinner at the Library of Congress I would tell you that you were nuts.

When I was growing up I was told that I was dumb and I would not be able to do anything like that. But I showed them that I'm not dumb and I know how to make it in life. I'm 57 years old and I'm learning to read so you can too.

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