Ending the erasure: Oral history project documents the lives and struggles of schizophrenia patients

CINCINNATI - In her experience, Cincinnati psychologist Lynda Crane found that of all the injuries inflicted by schizophrenia , the greatest could be the pain of being forgotten. The diagnosis, she believes, somehow erases the person. Families often shun a sick relative. Busy care providers dealing with symptoms can lose sight of the human being at the core.

For years, Crane sought a way to enlighten her students and others about the ordinary souls who manage to live with schizophrenia despite its extraordinary burdens: confused thinking, delusions, hallucinations, fear. Then Crane discovered a tool more commonly used among sociologists and anthropologists: oral history . Employing the device with people who are schizophrenic has shifted her own perspective about a disease the professor at the College of Mount St. Joseph thought she knew so well.

“People with schizophrenia do not lose their individuality, even when the illness is very severe,” Crane said. "What I discovered through oral history is that it’s not about schizophrenia. It’s about a complexity of life that is very hard to get at any other way.”

In the past three years, on their own time and with no outside money, Crane and a Mount St. Joseph colleague, psychologist Tracy McDonough, have built the Schizophrenia Oral History Project , which they say is the only one in the country dealing with this illness.

They have recruited two dozen people to sit down with them and a voice recorder, and of their “narrators,” the psychologists have simply asked: What’s it like to be you?

“The real beauty of this project comes out of the fact that Lynda and I really try not to ask a lot of questions," McDonough said. "The narrators want to tell their stories. They have something to say. Many of them have told us that no one has ever asked them about their lives before.”

Finding narrators

To start the project, Crane and McDonough put out the word to local mental health organizations. They were looking for patients who were stable enough to talk to them--with an important caveat:

“We wanted the narrators to contact us directly,” Crane said. “We didn’t want the providers to make the call because that can create a sense of, ‘I have to do this because my therapist wants me to.’ So each of the narrators had to take the initiative.”

Shirley Austin , 47, lives by herself on the west side with her terrier Fluffy. After a nightmarish childhood of sexual abuse and violence, she was diagnosed with schizophrenia as a teenager. She said that even though she is regular with her medication, has relatives nearby and attends a church, she wrestles with loneliness. When her therapist told her about the oral history project, Austin (pictured below) was curious.

“Not even my therapists have ever asked me about my life that much,” Austin said.

“I felt like I got strength and courage talking about what happened to me. I want to tell all the teenaged girls to be strong, that I’m a survivor, and they can be, too.”

As the oral history project has grown, Crane and McDonough have delivered more than 30 talks to local groups and academic organizations, with a PowerPoint presentation and audio clips. The feedback has been positive. Listeners say they come away with changed attitudes. The website includes 17 narrators 

“I like to think of myself as open-minded, but the Schizophrenia Oral History Project helped me see that I was stigmatizing patients,” said Vicki Cheng, who is about to graduate this month from nursing school at Miami University. “I would not have been surprised to learn that a patient with cancer or heart disease loved organic gardening or painting. Why in the world should I be surprised that someone with schizophrenia has hobbies, too?”

The project has had an impact on its narrators. Alice Fischer , 43, lives with her mother and brother in her childhood home in Price Hill. Fischer has schizoaffective disorder , a variant of schizophrenia, and she says got teased from grade school well into adulthood.

“Even right now, sometimes on the bus, people say mean things to me.”

Fischer (pictured above) likes to paint, filling poster boards with owls or hearts or hand prints with vivid, upbeat messages for world peace; the art now is featured on the oral history’s website. She jumped into the oral-history project right away as one of its first narrators because she believes newspapers and television give the wrong idea about people with mental illness. Her brother, who has schizophrenia, has resisted Fischer’s prodding to participate in the oral history in part out of fear rising from the widespread social misunderstanding.

“I want people to know that I’m not dangerous,” Fischer said. “They don’t know what a nice person I am.”

A personal project

The oral history’s website announces that the project is dedicated to the memory of Douglas Marquis , diagnosed

with schizophrenia at 18. After six years of struggle, he committed suicide. He was the reason Crane started the project. He was her son.

“It took me a long time to come to terms with it,” she siad. “I’m a psychologist, and even I had a hard time understanding it, how this bright young man, with a brilliant future, could suffer like this. One thing I learned was that as soon as you mentioned the word, people stopped seeing the person. They just saw the diagnosis or a collection of symptoms. Doug, my son, was forgotten.”

One of the narrators most gravely affected with schizophrenia is Paul Drake , 49. He has lived alone for 14 years in a small, cluttered apartment with his tabby cat Tiger. Through his reading, he has learned enough about organic gardening to supplement his meager food budget. He starts his tomato plants in plastic cups in his windowsill. He has taught his neighbors how to garden.

As with all their narrators, Crane and McDonough have shown Drake written responses from audiences that have listened to the recordings. The reactions please him, Drake (pictured above) says. Amid the disorder of his mind, he frames a sentence to describe the impact that his participation has had on him.

“It gives me,” he said, “some immortality.”

Crane is retiring from teaching this spring and turning over leadership of the Schizophrenia Oral History Project to McDonough, who has been applying for grants to support more work. A few weeks ago, they got a call from a new narrator. Alice Fischer’s brother now is ready to tell his story.

Resources:

(All photos by A. Saker)

Connect with WCPO Contributor Anne Saker on Twitter: @apsaker .

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