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At the heart of disability, a “positive perception of self”

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Copies of Rolling are available on VHS cassette for educational uses for $15. Send inquiries to Gretchen Berland, M.D., Yale University School of Medicine, 333 Cedar Street, LMP 87, P.O. Box 208033, New Haven, CT 06520, or via email at gretchen.berland@yale.edu.

Life on wheels

Filmmaker and physician Gretchen Berland gave cameras to three disabled people and asked them to shoot their everyday lives. Rolling, the documentary that resulted, shows us what the world looks like from the seat of a wheelchair.

By Cathy Shufro

Vicki Elman sits in her wheelchair, stranded on the sidewalk in front of her California house. Her wheelchair motor has stalled, and the van driver has refused to roll her into her house, saying it’s against the rules. She can’t phone for help, because her cell phone is getting no signal. Elman, who has multiple sclerosis, uses the lightweight camera mounted on her wheelchair to film herself. She is sobbing, struggling to regain her calm. “I guess I will spend the night here,” murmurs the 51-year-old woman. As the sky darkens, her face melts into a silhouette.

Ernie Wallengren can’t walk anymore, and he knows things will get much worse as his disease progresses. He has ALS, a fatal neurodegenerative disease. “I am bored beyond belief. The boredom—boy, is that the mainstay of life with ALS,” says the 48-year-old television writer and producer, whose credits include The Waltons, Falcon Crest and Touched by an Angel. He stares silently into the camera for a few seconds. He sighs. “This is going to suck.” A rhythmic thumping comes from another room; one of his five children is practicing drums.

Sixteen months later, when Wallengren can no longer speak, he films himself wearing a headset that translates subtle head movements into Morse code. A computer translates the code into an artificial voice. It speaks for Wallengren in a monotone. “It’s a tedious process that limits how often I can yell at my children.”

At the age of 16, Galen Buckwalter was ranked third in the half mile in the state of Pennsylvania and ran “for the sheer fun of it.” Then, he says, “a smooth swan dive on a nice summer day ended when I hit a rock and was left paralyzed from the neck down. I’ve used a wheelchair for 30 years now.” As he films some friends shooting baskets, he says, “I’d take them all to the cleaner back in the day. That’s one thing I can do, is talk about the glory days. Who’s going to argue with me?”

These scenes come from Rolling, an award-winning documentary about life in a wheelchair produced by Gretchen K. Berland, M.D., an assistant professor of medicine, who came to Yale three years ago after a career in public television and a subsequent career shift into medicine. Beginning in the summer of 2001, Berland asked Los Angeles-area residents Elman, Wallengren and Buckwalter to record the view from a wheelchair. She gave each of them a small video camera, lots of tape and free reign.

“I had no idea what those three people would film,” Berland recalls. She expected they’d mostly record daily activities in a wheelchair: getting dressed, opening doors, transferring from wheelchair to driver’s seat—what Buckwalter jokingly calls “Gimp 101.” And at first, that’s what they filmed.

“Then, over time, something happened,” says Berland. “They began to film more than the processes of care. They began to use the cameras to document the events that were impacting their lives.” Over the course of two years, the three recorded 212 hours of tape. From that raw material, Berland and her co-director, Rhode Island film editor Michael Majoros, crafted a 72-minute documentary. The result is a film, says Berland, that “makes the invisible visible.”

Last fall, Rolling was named best documentary at the Independent Film Project conference for works in progress, held in New York City. Oscar-winning Los Angeles filmmaker Chuck Workman, one of five jurors for the documentary competition, said the panel chose Rolling as the best work among 63 juried entries.

“I’ve never seen anything like that before, where the filmmaker didn’t try to manipulate the material,” says Work-man. “It’s very easy for a [documentary] filmmaker to manipulate and push an agenda. She was allowing the reality to speak to us. She was allowing the disabled people to speak to us.”

Rolling was one of 14 new American films chosen by the Independent Film Project for screening at the European Film Market, which was held in conjunction with the Berlin Film Festival in February. A week later, at the invitation of the New York Film Society, Berland and Majoros showed and discussed the film at Lincoln Center in New York. Executives from Sony Pictures Classics have asked Berland for a copy to review, and she hopes that the film will be broadcast on television. (When a major commercial network discussed the possibility of airing the show if she would make the three subjects’ lives appear less arduous, however, she declined.)

“Broadcast, for me, is just the first way to get the film out,” says Berland. She also wants the film seen by legislators, medical students, practicing physicians and people who make health care policy, so they can visualize the lives of the 1.6 million Americans who use wheelchairs. “I think that disability rights is where civil rights was 40 years ago,” she says.

Patient as filmmaker
Berland’s work did not grow out of advocacy. Granted, in disseminating her film, Berland uses her documentary in a conventional way: to educate audiences about a set of problems. However, her work originated not as investigative journalism but rather as a means of doing research.

“You can use the visual medium to explore aspects of a patient’s experience that we might not otherwise be able to capture using any other kind of data collection tool,” Berland explains. “When you give the camera to someone else, it really shifts the power. It’s much more really, truly, a process of discovery for both subject and researcher. … I didn’t control the camera. They controlled what they chose to show us.”

What emerged are the stories of three people “trying to live with as much dignity as possible. Three people—not three people in wheelchairs—who were very different people.” (Wallengren died in May 2003 at age 50.)

The film shows the three enjoying themselves: Buckwalter singing “Charlie” with his rock band; Wallengren careering down the sidewalk in his motorized wheelchair in a race against his son; Wallengren trying not to laugh while drinking orange soda, as a boy from the all-star basketball team he coaches teases: “Do not make a guy with a neurological disorder laugh”; Elman, triumphant and elated, after she falls from bed while transferring into her wheelchair and then strategizes with two neighbors about how to lift her safely off her bedroom floor. “We did it!” exults Elman. “We didn’t even call the paramedics!”

Rolling also shows the three subjects enduring the humiliations imposed by insensitive doctors and thoughtless architects and by the irrationality and inadequacy of the health care system. Elman reveals these indignities most starkly in her self-portrait. On the night she is stranded outside her house, a neighbor does eventually rescue her. But when her electric wheelchair first breaks down, her internist tells her that she is “shit out of luck.” Elman cannot afford a spare chair, and the doctor tells her that if no “babysitter” is found to assist her while the chair is out for repair, she must go to a nursing home for “a couple of days, at least.” In fact, she spends a month in the nursing home, a month that begins with her struggle simply to enter the building. No one hears her pounding on the front door, and she uses all her strength to heave the door open. Later that day, she films an aide refusing to take her to the bathroom; the aide tells Elman to use a bedpan or a diaper instead. After that, Elman tells us, the nursing home took away the camera.

The day she finally goes home, Elman falls and must return to the nursing home. After a month in bed with no physical therapy, she is debilitated. Berland reports that the bill for the two nursing home stays totaled $11,700. The cost would have gone far toward the $22,400 needed for a new chair. “How does one quantify the indignity she experienced?” asks Berland.

Scenes from Rolling resonated for New Haven resident Björn Ljungström, a wheelchair user for 10 years who saw the film last fall when Berland screened it at Yale’s Program for Humanities in Medicine. “The humiliation adds up more and more so you get crushed down. It gets to you,” says Ljungström, a retired engineer who moved here from Sweden six years ago to marry an American. “You can have a very good life in a wheelchair,” he says, but “you have to get the right equipment, the right assistance. All of this is more difficult and more expensive in America, compared to Sweden, where I have never paid one cent for equipment.”

He bridles at the comment by one audience member that Berland’s depiction of disabled people is uplifting because it reveals the triumph of the human spirit over adversity. “Should we be impressed by slaves who survive?” asks Ljungström.

“This really has to be shown to as many people as possible,” says Alex Diaz de Villalvilla, a first-year medical student who also attended the screening. “I was amazed at how little assistance Vicki [Elman] has and how poorly the health care system responds to people like her. She’s not a one and only.” He says the film should be shown, in particular, to health care policy-makers, so that they will see “exactly what they’re responsible for.”

Working for NOVA
Despite a background in television, Berland never expected to use filmmaking in medical research. She thought she’d left the medium behind when she enrolled in medical school in 1992 after five years of making documentaries for public television. Since age five, she’d planned to be a doctor like her father, whom she describes as “the kind of physician you want to take care of you.” He still practices in Portland, Ore., where she grew up, the older of two daughters. (Her sister works for the World Bank, specializing in the role water quality plays in international conflict.) Berland thought she’d like medicine because it combines science, advocacy and making people’s lives better.

Then, as a biology major at Pomona College in California, she’d become fascinated by the challenge of making science accessible to a nonexpert audience. She worked for NOVA, the science series at WGBH in Boston, and later for the MacNeil/Lehrer NewsHour in New York. At NOVA, she and her colleagues would spend a year on a show lasting a single hour. “One year to one hour,” she says. That hour could draw an audience of millions.

Berland worked on seven shows, including one about the race to develop the superconductor that won her team an Emmy in 1988, and a documentary on chaos theory.

After several years in television, Berland tried to imagine how she would feel at 40, looking back on her career. She recognized that she would regret not studying medicine. At age 28, she enrolled at the Oregon Health Sciences University. She felt sure she’d left her life in television behind. “I didn’t want to be a TV doctor.”

As it turned out, Berland did not forsake film for long. Her first reunion with the camera occurred during a psychiatry rotation. While visiting teenagers in the city’s juvenile justice center, she asked the incarcerated teens where they pictured themselves in five years. “Dead,” they replied. The stories they told her, of violence, exploitation and deprivation, “were never in the chart.” She thought: “Here they are in a multimillion-dollar sophisticated jail, and we have no idea about who these kids are. We know nothing about their lives.” She got a grant to give cameras to five teenagers outside the jail, and they made a film that was broadcast on public access TV.

When she moved to St. Louis in 1996 for a residency in medicine at Washington University, she used film again. She lent cameras to a dozen fellow residents who filmed a “video diary” of what happened on call. Covering overnight for another doctor, she says “is the experience where residents really learn to be doctors. There’s no manual that tells you what to do, and it can be very stressful.” The 1998 half-hour film, Cross-Cover, has been distributed to 150 residency programs nationwide as a springboard for discussion.

Getting the idea for the wheelchair film was “serendipitous.” It came to Berland in 1999, when she was a fellow at UCLA’s Robert Wood Johnson Clinical Scholars Program, which trains young physicians to do health services research aimed at improving health care. Berland was attending a medical conference—and casting about for an idea for her research project—when she noticed a participant who used an electric scooter. Everything took longer for the woman: getting through doors, rolling up to the microphone to ask a question. “I thought, ‘I wonder what her life is like.’ ”

Berland could simply have interviewed the woman, and others in wheelchairs, but the questions would have reflected what Berland wanted to know. “That assumes we can define the boundaries of what is important,” says Berland. “The camera lends itself to discovering something new. In medicine we interrupt people every seven seconds. The camera gives the patient power.”

While giving cameras to teenagers and to residents had been sidelines to her main occupation of training to be a doctor, the stakes were higher when Berland began work on Rolling. This was part of her research as a fellow in the clinical scholars program, where expectations are high. Although Berland also worked on a quantitative study of the accuracy and sophistication of medical information on the Internet, taking on a film project marked her as nontraditional.

“I wasn’t sure what I was looking for. That’s where people get nervous, because it’s risky. You don’t have a hypothesis you’re going to test or an outcome that you’re going to measure.” She wasn’t even sure how she would use the tapes she got from Elman, Wallengren and Buckwalter, whom she found through colleagues. At first, she thought she might use film sequences to illustrate a paper about the lives of people who use wheelchairs. But in the end, she realized that the footage was so powerful that it had the capacity to become a film.

Finding that powerful footage was “a process of discovery,” says co-director Majoros, a film editor and documentary filmmaker on the faculty of the Rhode Island School of Design. Joining the project after shooting had begun, Majoros quickly saw that editing Rolling would differ from editing a documentary he’d filmed himself. When you shoot your own footage, he says, “it’s pretty obvious what the good stuff is and the bad stuff is.” Because Rolling was filmed by “neophytes,” he and Berland had to search, without preconceptions, for “the pieces that tell a story.” Among hours and hours of seemingly dull footage, Majoros recalls, “all of a sudden there’d be a 45-second gem.”

He noticed some differences between his choices and Berland’s. In deciding what to include, he says, “I will tend to opt on the side of a good story. She will come at it much more from an academic background—to make sure we aren’t misrepresenting something.”

Berland had already worked with Majoros, on Cross-Cover, having met him through a colleague. She found a collaborator of a different sort—and made a Yale connection—through her work as a clinical scholar at UCLA. Attending meetings of clinical scholars from around the nation, she got to know Harlan M. Krumholz, M.D., a professor of medicine, who heads Yale’s clinical scholars program, a sister program to UCLA’s. Over time, Krumholz developed into an across-the-continent mentor for Berland. Anyone doing scholarly work needs support, but when the work is unconventional, she says, “it really helps to have someone in your corner. Harlan as well as others here [at Yale] have provided that support.”

Krumholz helped to recruit Berland to the Yale faculty, and since November 2001 she has served as a core faculty member of the clinical scholars program. She spends about a third of her time as an internist, treating patients through the School of Medicine’s primary care program and teaching medical students and residents.

“Gretchen has an enormous amount of creativity and vision around issues very relevant to the way in which our health care system works,” says Krumholz. “Her work helps us see what may be right in front of us but may not be visible to us.”

A complement to large studies
Two factors that obscure the physician’s view of the patient’s experience are pressures on doctors to be efficient and the advent of megascale studies. “Gretchen’s work is all the more important because we’re in an era when house calls are no longer made,” says Krumholz. During standard 15-minute office visits, “physicians have lost the opportunity to explore what patients’ lives are really like,” he says. Also, advances in information technology allow researchers to amass and analyze huge quantities of data and to observe patterns. But, says Krumholz, “enormous data sets are very reductionist. Standardized collection of data doesn’t allow for nuance and for understanding the tapestry of what makes up people’s lives. … Whether it’s research, or art or some combination, Gretchen’s work is a great complement to the studies in which we’re dealing with large numbers of people.”

Berland has begun another research project using cameras and has ideas for two others. She is working with Krumholz to study what happens when a hospitalized patient has a cardiac arrest. The camera will serve as a data collection tool for a study of how hospital staff handles “codes.” Berland also wants to learn about health care from the perspective of ordinary people by giving them cameras. She is thinking of doing that research in the defunct manufacturing hub of Waterbury, Conn. She wants to use film to study how patients re-enter the outside world after spending time in the hospital.

Krumholz said Berland’s work must face the test imposed on all qualitative research: is it generalizable? He answers yes. “The truths that you see when you watch her film ring so true, resonate so well, that you just know these aren’t isolated experiences of these individuals. These themes transcend these individuals and must speak to a broader experience.

“The challenge she faces is whether an academic medical center can adapt to understand how to credit this work, because it is so far outside the mainstream. … The academic system is used to counting papers published.”

Berland’s view of herself as a researcher came through clearly to filmmaker Workman. Unprompted by any discussion of what constitutes research, he called Rolling “a scientific study … a scientific presentation of what happens” to Elman, Wallengren and Buckwalter.

Workman admires what he called the “purity” of the film. “You don’t have Charlton Heston or Gene Hackman narrating it. It’s so much more interesting for an audience to make their own decisions about this.” And he said that audiences have seen so much nonfiction that “they have a very good detector of what isn’t real and what isn’t truthful.” Viewers can tell that Berland has not distorted the material to construct an audience-pleasing film.

“I hope the movie goes far,” says Workman. “I hope she makes more movies.” YM

Cathy Shufro is a contributing editor of Yale Medicine.

At the heart of disability, a “positive perception of self”

Galen Buckwalter, Ph.D., agreed to film life from his wheelchair to show that a disabled person is neither a hero nor a victim, just an ordinary person doing his best to shape a satisfying life. At the least, Buckwalter thought, the film would “normalize” him and the other wheelchair users in the documentary. It would help viewers feel more at ease around people in wheelchairs.

Rolling managed to do much more than that, says Buckwalter. “We went further,” says the California research psychologist, who lost the use of his legs in a 1973 diving accident. “We presented an analysis of what is at the essence of disability.” That essential element, common to all people with disabilities, he says, “is the need to integrate dependence into our daily lifestyle, in a way that’s egosyntonic—consistent with a positive perception of self.”

The award-winning film, produced by Yale internist Gretchen K. Berland, M.D., shows three lives lived at odds with a culture that teaches that “we have to be lone guns.” “My reality is I’m dependent on a wheelchair,” says Buckwalter in a telephone interview last winter. “That doesn’t change everything, but it changes quite a bit. ... For me to exist—to borrow a phrase—I need a village.”

Buckwalter used the camera Berland gave him to record both pleasant and distressing moments: he banters with friends around a campfire, and he teases his wife, Deborah, for choosing schmaltzy music when they share a glass of wine. He shows himself reconnoitering the parking lot outside their Pasadena loft to avoid dog feces as he rolls out to his car.

In the scene that he found most difficult to film, he muses about the increasing pain in his shoulders, arthritic from years of lifting himself in and out of his chair. At age 47, Buckwalter faces the prospect of switching to an expensive motorized wheelchair. The change will be a blow to his self-image. “Even after I got hurt, I still considered myself a very physical man,” he says. “I viewed my injury as very static. It wasn’t going to change as I aged.” But, he now acknowledges, “being disabled, you age in dog years.”

Buckwalter joined Berland’s documentary project when she was a Robert Wood Johnson clinical scholar at UCLA, looking for wheelchair users to collaborate on her film. The two met through a fellow in Berland’s group who was getting help on his project from Buckwalter, who works at the Southern California Kaiser Permanente Medical Group developing tests for age-related cognitive changes.

Buckwalter almost died last summer when medication he took to prevent blood clots caused a catastrophic gastrointestinal bleed. As he struggled to survive, Buckwalter recalls, “I was just trying to get in touch with what was good about me. … I think it was one of those times where if I didn’t really want to live, I could have gone. And I really did want to live.”

As he regains his strength, he reports that he is “feeling almost ecstatic at being alive and being engaged. … Life is very bright right now, and Rolling is part of that brightness for me. I literally feel blessed to be part of this. Because when I watch Rolling, I feel like I’m part of something much bigger than me: I think it succeeds at portraying disability as a situation that does not at all impede having a richly rewarding life.”

Galen Buckwalter, who was paralyzed in a diving accident 30 years ago, says that Rolling demystifies and normalizes the experience of wheelchair users: “I think it succeeds at portraying disability as a situation that does not at all impede having a richly rewarding life.”

Vicki Elman, who has multiple sclerosis, exercises in a scene from Rolling that shows her when things are going well. The film also conveys the intense frustration Elman experiences when her motorized wheelchair breaks down.


			Originally published in Yale Medicine, Summer 2004. Copyright © 2004 Yale University School of Medicine. All rights reserved.