Confusing disability and tragedy

Assignment: Reporters need to explore why it is so difficult for society to see the human being underneath a disfigurement or disability. 

By Beth A. Haller

Originally published April 29, 2001

Coping with adversity. The recent Pulitzer Prizes in journalism confirm that this theme is still a winner.

The Oregonian won the 2001 prize for best feature writing a few weeks ago with its series on Sam Lightner, a teen with a facial deformity. It is poignant and gripping, as it draws the reader into his life and his decisions about trying to “fix” his face surgically.

Like all good journalism, the series is well-written and researched. It has a depth that actually puts the reader into the scenes within Sam Lightner’s life.

However, I am concerned about the messages these “coping with adversity” stories send to society about people who are physically different. I hope they promote acceptance, but I fear they sometimes promote pity.

A few years ago, I conducted a study of national journalism award winners that dealt with disability or illness from 1984 to 1999. In those 56 stories, I was looking for the cultural messages about disability and illness hidden within the prize-winning stories.

I looked at winners from Pulitzers to Peabodys and from magazine awards to Society of Professional Journalists awards. The idea for the study came from previous research into the news values of National Press Photographers Association winners, which found that that award-winning feature photos most often fell into a content category called “coping with adversity.” Another prominent content area was illness or disability.

Prestigious journalism awards signal “validation” of excellence for newspapers, magazines, and TV news. But these award-winning stories also forcefully put information about disability or illness onto the public agenda and put images of people with disabilities into the news. Because of their prestigious status, these prize winners remain in the public’s consciousness much longer and provide models for younger journalists.

Put succinctly, these stories have staying power.

So my concern is about the impact of these award-winning stories on attitudes toward people with disabilities.

What I have found is that many of these stories are awash in inspiration.

What’s wrong with inspiration? you might ask. Isn’t it uplifting? Doesn’t it make readers and viewers “feel good?”

The trouble with inspiration is that the flip side of its message is tragedy. HolLynn D’Lil, a wheelchair user, explained in Mainstream magazine that, “Being told that you’re inspirational when you’re doing something ordinary is an assault on your self-concept. Suddenly you’re reminded once again of the traditional attitudes about disabilities, that no matter who you are, what you do, how you feel, to some people you’ll always be a tragic figure.”

However, this notion of disability and chronic illness as tragedy fits squarely with journalistic news values that focus on the unusual or the dramatic.

As one prominent college journalism textbook, “Reporting for Print Media,” explains: “Deviations from the normal … are more newsworthy than the commonplace.”

However, as a former journalist and current journalism professor, I want to challenge journalism’s continuing use of the value of “unusualness.” I fear that it may cause negative stereotypes in the news, especially of people who are physically different.

When journalists focus on how someone deviates from the norm and when they “pull on heart strings” to add drama to content, they may send a message of pity and tragedy to their audience.

D’Lil explains what nondisabled people don’t understand: “That a life with a disability is still a life after all, to be enjoyed and lived to the fullest.”

So should journalists, many of whom obviously don’t understand the disability experience, stop writing these award-winning stories?

Actually, journalists should be covering disability issues more, rather than less. But they could promote better acceptance of disabled people by focusing their coverage on society’s barriers, rather than on inspirational and one-dimensional stories of a person’s life with a disability.

Depicting people with disabilities doing something symbolically empowering or confronting barriers sends positive cultural messages of people with disabilities as equal citizens in society.

The barrier that Sam Lightner confronted, as chronicled in the Oregonian series, was negative attitudes.

“Except for the deformity, Sam was normal in every way. But everyone outside Sam’s circle of family and friends would have a hard time seeing beyond the mass of tissue on his face,” Tom Hallman Jr. writes in the Oregonian.

To me, this problem that society has with difference in appearance, not Sam’s face, should be the focus of a prize-winning series.

Sam’s face is very unique: “A huge mass of flesh balloons out from the left side of his face. His left ear, purple and misshapen, bulges from the side of his head. His chin juts forward. The main body of tissue, laced with blue veins, swells in a dome that runs from sideburn level to chin. The mass draws his left eye into a slit, warps his mouth into a small, inverted half moon. It looks as though someone has slapped three pounds of wet clay onto his face, where it clings, burying the boy inside,” Hallman reports.

Hallman intersperses tidbits about attitudinal barriers with more medically focused stories on Sam’s decision to have surgery to reduce the mass on his face.

Appearance and prejudice

The series is poignant and gripping, but I would like to argue for an inversion of the focus of the stories, so that they give more time to the problems caused by the outside world’s prejudice against Sam’s appearance, and less space to the medical issues.

It is society’s prejudice against his appearance that leads the teen to OK the dangerous facial surgery, which might harm him more than help him. His family and friends accept his face the way it is. His younger sister, Emily, even worried that after the surgery he might not look like himself.

In the Oregonian series, Sam’s father, David Lightner, explained why the surgery was frightening: “It’s the unknown. Here we have the situation that Sam deals with. It’s the known. It’s not ideal for him because of his face. His face freaks people out. But it’s a known property. And it’s a little bit scary to risk everything because the world doesn’t accept his face.”

Out in public, people assume he is mentally retarded or his mother abused drugs while pregnant. Neither is true. Others give him their prayers or just look away.

“The family doesn’t see it. It’s the rest of the world, all of us, the strangers who can’t see beyond the face. That’s the sad part,” Sam’s surgeon explained.

That’s the story journalists need to explore — why is society so unable to see the human being underneath a disfigurement or disability?

Getting past the fear

Feminist disability scholar Susan Wendell of the Simon Fraser University in British Columbia says in her book “The Rejected Body” that it is more than just fear of physical difference at work in society’s attitudes toward people with disabilities. Humans can usually identify with people very different from themselves, different genders, different ages and different races.

“Something more powerful than being different is at work. Suffering caused by the body, and the inability to control the body, are despised, pitied, and above all, feared. This fear, experienced individually, is also deeply imbedded in our culture,” Wendell explains.

Journalists need to understand that they, too, are inculcated with these cultural fears. So if they feel outright pity for people with disabilities or associate disability with tragedy or adversity, it flows into their stories.

Disability-studies scholar Frank Bowe explained in his book “Handicapping America” that one very incorrect assumption affects attitudes toward disability: “That disabled people are different from us more than they are like us, that their disabilities somehow set them apart from the rest of us.”

It is this myth that award-winning journalism should address.

Although the Oregonian series was more medically oriented than I would have liked, it did give readers a glimpse of Sam, “the boy behind the mask,” and that may have changed some attitudes.

On a Web site set up to send messages to Sam, one child whose parents read her the series explained that she now tries to look past a person’s appearance.

“There are kids that look different that go to our school and I’ve always been a little nervous to talk to them — I won’t feel that way anymore, I promise,” wrote 7-year-old Sara.

Hopefully by the time Sara is an adult, journalists will be winning Pulitzer Prizes for chronicling what is wrong with society’s attitudes toward disabled people, rather than casting them as inspirational or tragic figures.

Beth A. Haller, Ph.D., an assistant professor of journalism at Towson University, researches and writes extensively on media and disability is sues.

Copyright © 2001, The Baltimore Sun

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