Living in the Shadows: Illiteracy in America

Millions live with the crippling secret that affects their everyday lives.

October 14, 2008, 5:20 PM

Feb. 25, 2008— -- It's a chronic crisis of huge proportions, one that keeps millions of Americans living in the shadows. And for nearly all of her of 45 years, Monica Baxley had lived with the crippling secret.

"I cried a lot over this," she said, "when I was alone and just would wonder what could be done, you know, if there was any help out there for me."

Click HERE for a list of literacy resources.

Baxley, of the Florida panhandle town of Chipley, was functionally illiterate. She quit school in the ninth grade, and for 30 years kept her secret from friends, family and even her husband.

"I didn't want to be exposed, beyond anything else. That was the most important thing -- for no one to ever learn."

Baxley joins so many others with literacy challenges: 7 million Americans are illiterate, 27 million are unable to read well enough to complete a job application and 30 million can't read a simple sentence.

Her travel was limited because she was unable to read road signs. She was unable to read a newspaper or food labels in a supermarket.

Baxley never voted in an election. "I didn't know who or what to vote for," she said.

Her illiteracy even impacted her physical health, as she avoided seeing the doctor out of fear she would have to fill out a medical form or read a prescription.

"My health is poor now, but I really believe that's because I never went to the doctor and had my physicals and stuff that I should have had," Baxley admitted.

A recent study from the Archives of Internal Medicine revealed patients who had difficulty reading prescriptions were 50 percent more likely to die from disease than patients who were literate.

"It is a life and death issue," said study author Dr. David Baker of Northwestern University. "Literacy affects your health in so many different ways," he said, from inability to properly follow instructions to not knowing about common conditions or what symptoms to look for.

"So when you put all of these things together it's not surprising that people with the lower literacy levels are more likely to die [earlier]," Baker said.

Baker said his team has interviewed hundreds of patients about their experiences, and Baxley's situation was a common theme -- hiding illiteracy from those close to them.

"It's very scary for people" when their first contact with the healthcare system involves filling out detailed medical forms. "That's not a great start," Baker said, "and then when they are seeing their doctor they're given other information they don't understand" such as prescription information and instructions to take care of themselves.

"Many people… are afraid to come in and see the doctor and they continue to not seek care," said Baker, which results in the worsening of their conditions and an increased likelihood of trips to the emergency room.

The American Medical Association Foundation did a private study of patients who could not read. One woman who provided a testimonial said signed a form agreeing to a medical procedure with no idea what it meant.

"The nurse said, how are you feeling since your hysterectomy?" according to the testimonial. "And I acted as normal as I could, but inside, my mouth fell open and I thought to myself, how could I be so stupid as to allow somebody to take part of my body and I didn't know it?"

Another patient took her medication improperly, afraid to tell her physician about her difficulty reading.

"I didn't take it right. I admit it," her testimonial said. "I just didn't have they nerve to ask them and I didn't want anyone to know I couldn't read."

"It's a tremendous problem when you think about the costs for us, economically, health-wise," said Sandra Baxter, director of the National Institute for Literacy.

"For so many adults who don't have the education, it's embarrassing to have to say, would you explain that to me?" Baxter said of potential problems during a doctor appointment. "And so they don't ask the questions that they need to."

Undiagnosed learning disorders, poverty and an unstable home life are all factors.

As for Monica Baxley, she confronted her illiteracy at age 41 and learned to read. But illiteracy persists for millions who continue to live with it in the shadows.

If someone you know needs help, contact your library, or browse literacy resources HERE.

To read part 2 of the series Living in the Shadows: Illiteracy in America, click HERE.