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Sarah's story.

Be sure to ask the right questions before writing about the mentally ill

Cool and confident, Robin Schaffer breezed around a central Phoenix drop-in center for the chronically mentally ill one April afternoon.

The gregarious 22-year-old had just been hired by Survivors On Our Own as a part-time peer counselor and she was just doing her best to make everyone feel welcome.

Suddenly, Robin felt someone looking over her shoulder as a long-haired young man popped a Guns N' Roses tape into a cassette player.

As heavy-metal music blasted from the stereo, Robin cringed. Now someone was breathing down her neck.

"Sascha, please I'm working," she muttered, fighting to maintain her concentration.

It was no use. Sascha Sokolov, a 16-year-old Guns N' Roses fan, shoved Robin out of the way...

Some days Robin would like to just walk away from Sascha, Lissa, Jamie, Chewy, Tali, Kendra Ames and 18 other people who keep showing up and ruining things just when life seems under control.

But there is no escape.

Robin and the others live inside the mazelike mind of a young woman named Sarah, who a year ago was diagnosed as having multiple personality disorder...

When I was assigned to write about the impact of exercise on mental health and unexpectedly stumbled into the world of Robin, Sascha, Sarah and their 22 alternate personalities, I knew I was onto the most unusual story of my 10-year reporting career.

But I did not realize until later that reporting and writing "Sarah's Legion: 25 Selves," which ran in The Arizona Republic on June 3, 1990, would also begin my exploration of many of the ethical questions journalists face today as they write about the mentally ill.

The main questions I confronted when writing the story about Sarah were:

* How far should a journalist go to explain the effect of being in the news to someone who is mentally ill, or otherwise is more vulnerable than the average news source?

* Should the impact of the article on the person's family be taken into consideration because of widespread misunderstanding of and stigma against mental illness?

* In the case of a story about someone with multiple personalities, how many personalities must the journalist get consent from before writing the article?

* And even if the family and all personalities agree to the article, does the story have real news value or is just an exploitive look at someone with a bizarre problem?

Gina White, a spokeswoman for the National Mental Health Association who runs the group's annual media contest, said such questions have been asked only recently by journalists. Five to 10 years ago few people with mental illness wanted to speak directly to the news media about their lives and problems.

"We (the association) used to be the voice of the people, but we're not anymore," White said. "I would say things changed in the past 10 years, as the consumers (of mental health services) have begun to get organized themselves. These people want to speak for themselves and they are not afraid to have their picture taken."

In the past five years, several articles about Joseph A. Rogers, a leader of the national mental health "consumer" movement, have appeared in publications like The New York Times and American Health magazine. Rogers said although he was nervous about his family's reaction to a recent appearance on the Oprah Winfrey Show, his relatives loved the publicity and have started treating him like a celebrity.

"If we are going to bust least some of us must stand up with no fear of a bad reaction and state who we are and what we've been through." said Rogers, who has paranoid schizophrenia and is the founder of the Mental Health Association of Southeastern Pennsylvania and also heads the Philadelphia-based National Mental Health Consumer Self-Help Clearinghouse.

Richard Beeman, a Phoenix man with schizophrenia, said he went public with his struggle with mental illness and Arizona's lack of mental health services in 1983 because he wanted to get Survivors On Our Own, a self-help organization for the mentally ill, off the ground.

"At the time, people were saying things like 'Who does he think he is?' and 'He's delusional,'" Beeman said.

But today, Beeman said, members of his group have a different attitude: "It's 'Outta my way Beeman, I've gotta tell my story.'"

For instance, in March 1990, a publicist for the Mental Health Association of Maricopa County in Phoenix called Survivors On Our Own and asked if any members wanted to talk to a reporter about exercise. Robin Schaffer, the personality who often speaks on behalf of the others, seized the opportunity.

After meeting Robin and interviewing her about bicycling, I rushed back to the newsroom to tell my editor I wanted to profile Sarah's 25 personalities in a feature article.

Robin received a brief mention in the exercise article. Then, when I approached her about the larger story, I asked her to consider the questions I posed at the beginning of this article. I also asked her to sign a release so I could speak with her counselor, George Davies, and a psychiatrist who could verify she actually had multiple personalities.

"It will be a joint decision," Davies told me.

When I indicated I understood it was important that he be consulted, Davies said, "No, I mean a joint decision among the personalities."

At the time I pictured all 25 of Sarah's selves sitting in some sort of cerebral conference room to hash out the pros and cons of doing the story.

I later learned that the approach was much more casual: Robin simply got the idea to the others that if they didn't want to do the article, they should speak up. None did.

"Robin is the one who wanted to do it," Davies said. "Some of the others said, 'This sounds like fun' and the rest were indifferent. If someone was opposed, they would have sabotaged it."

Where is Sarah?

Over the course of the eight weeks, I met with eight of Sarah's personalities as well as Davies and Sarah's parents.

In a relaxed situation, Sarah's personalities come and go at will. But stress -- something as innocent as the sound of a vacuum cleaner or a particular rock music tape -- triggers frightened childlike personalities or those of rowdy teenagers.

Generally, the personalities I interviewed were fun-loving, up on current events, and highly intelligent -- IQ tests taken by various personalities range from 130 to 160.

Halfway through the project, I became concerned that I had not yet met Sarah, the "host," or original, personality. At the time, a Wisconsin man was on trial for the alleged rape of a woman with 46 personalities, only one of which was his date.

I thought it was crucial that I speak to and obtain the consent of the personality that carries Sarah's legal name.

One night Robin failed to keep an appointment for an interview. When I telephoned her house later, Sarah answered. Grabbing what turned out to be my only opportunity, I explained the project and the terse, depressed-sounding young woman gave her consent.

Throughout the course of the project, I talked to Robin about the impact an article in a Sunday newspaper read by more than 1 million people might have on her life. Robin maintained that even if the story temporarily disrupted her routine, the hassle would be worth it because multiple personality disorder is widely misunderstood and sometimes misdiagnosed. She thought there might be as many as 500 undiagnosed "multiples" in the Phoenix area and that, in Robin's view and mine, was news.

Ultimately, we decided to use photographs and most details about Sarah's life, but leave out her last name. Our concern was mostly for Sarah's parents, who live in Arizona and might have been viewed negatively after the article because multiple personalities are generally believed to be caused by child abuse. It is still unclear how Sarah's illness was caused.

"I think using my legal name would have been OK if it was just me," Robin said. "Those of us trying to fight the stigma of mental illness want people to know who we are so the public will understand we are not all criminals or stupid. But I didn't want my parents to have to fight the stigma."

Rogers said, "Of course not everyone is ready to go public, but that's still a choice someone should make for them."

Special vulnerabilities

But not all mental health professionals agree.

Long committed to codes of ethics that forbid them to violate patient confidentiality, psychiatrists, psychologists, and mental health counselors always conceal the names of patients in professional publications, even when patients have signed consent forms giving permission for them to discuss their cases.

So when Phoenix psychiatrist Mark Wellek picked up the paper and saw a large photograph of his former patient, Sarah, his blood ran cold. He later criticized the article on a radio talk show about multiple personality disorder.

"I felt embarrassed for her [Sarah]," he said in an interview for the QUILL.

Asked whether he thought mentally ill people should be named and photographed in news articles, Wellek said, "They have the right to do it, but it's illogical...part of the illogical thinking of a person who is mentally ill.

"That person is humiliating and embarrassing themself. They are subjecting themself to people who do not understand. And the stigma is still very much there."

Wellek said he believes newspapers should realize this, take a protective role and hide the identities of the mentally ill or people who have conditions that might be viewed negatively by the public. While he was not opposed to the Republic running the story about Sarah, he suggested it might have been better respected her privacy if it excluded the photographs and identifying information, such as Robin's place of employment.

Phoenix psychologist Mathilda B. Canter, past chairwoman of the ethics committee for the American Psychological Association, does not take as hard a line, but urged journalists to be cautious when writing about mentally ill people.

"The whole movement toward openness is relatively new and I don't think all the stigma is gone," she said. "The patients who are fighting for their moment in the sun may still have families who...would be horrified."

Canter suggests that journalists speak with friends, families, doctors, and therapists of mentally ill people they plan to write about to make sure they have a complete and balanced view of the person and their problems.

"I think we need to recognize different levels of vulnerability in our sources," said Bob Steele, associate director of the Poynter Institute for Media Studies in St. Petersburg, Florida. "The elected county official is not as vulnerable as the woman from the south side who has eight kids and has never been interviewed."

Steele suggests giving such vulnerable sources the chance to change their minds if they have second thoughts about appearing in the paper or on television; the chance to go unnamed or use a pseudonym; and the explanation of what the person might expect after they appear in the paper in the way of letters to the editor or people recognizing them on the street.

And Michael Josephson, director of the Josephson Institute of Ethics in Santa Monica, Calinfornia cautioned that some mentally ill people, like children and some developmentally disabled adults, are not competent to make legally binding decisions.

"I would start with the presumption that it is OK to use names...then ask the question of whether the person is capable of making the decision and entering into a legally binding agreement," he said.

The questions I asked while reporting the article about Sarah seem to cover most ethical problems that arise in mental health coverage.

For instance, when I wrote a five-day series this year about Arizona's lack of housing for the mentally ill, I went to the patients themselves for anecdotes, interviewing them on the streets, in jail cells and in dilapidated boarding homes.

I was careful to explain to each person that the information they shared would appear in the newspaper. The photographer that I worked with and I also explained to each person that they had a choice about whether to be named or pictured in the paper.

In the end, most of the people we interviewed appeared with full names and photographs in the series, which was published in July. The newspaper received no complaints and many of the mentally ill people said they were proud to have had their say about Arizona's lack of housing and mental health services. And the newspaper received no accusations of exploiting mental illness for a good story -- the lack of housing and other problems facing the mentally ill are serious issues that need coverage.

There also was little negative reaction to the story about Sarah, with the exception of Wellek's comments and some evangelical Christians who wanted to perform an exorcism and showed up at Robin's workplace.

Robin since has spoken about multiple personality disorder on radio programs and at two national mental health conferences. Currently a Phoenix television station is filming her for a special program on multiple personality disorder.

"Most people said I was courageous," Robin said. "Being mentally ill is nothing to be ashamed of. It's nothing I'm ashamed of, and I resent it when people say I should be."

[Cathryn Creno covers mental health and social issues for The Arizona Republic. Her article "Sarah's Legion: 25 Selves" won a 1990 Silver Award from the National Mental Health Association and was part of a portfolio of articles that won the Arizona Press Club's 1990 Virg Hill Print Journalist of the Year award.]
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Copyright 1992 Gale, Cengage Learning. All rights reserved.

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Title Annotation:Special Report: Diversity; includes related article; mentally ill person
Author:Creno, Cathryn
Publication:The Quill
Date:May 1, 1992
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