Image courtesy of Thirteen/WNET
Rolling: a documentary by Gretchen K Berland, Associate Professor of Medicine, Yale School of Medicine
Disability Research from the Patient’s Perspective
Training Good Doctors
Medical educators recognize that training good doctors requires a good deal more than teaching students physiology, anatomy, pathology, and therapeutics. In recent years, phrases like “cultural competency,” “empathy,” “patient-centered care” signal the recognition that understanding the patient’s experience of health and illness is a critical ingredient in an effective doctor-patient relationship. Yet, what sort of patient’s perspective emerges from research done in hospital wards and outpatient clinics—where, among other things, medical students receive most of their clinical education?
For Gretchen Berland, M.D., an internist at Yale School of Medicine, something was missing: “As a doctor, I usually get to know someone inside a hospital or in a clinic. But there are times when I feel like I’m missing something. So I wondered, what could I learn if I gave someone a video camera and asked them to show me their life?”
This is how Dr. Berland narrates the opening scenes of her most recent documentary film, Rolling. Originally part of her research as a Robert Woods Johnson Clinical Scholars fellow, the film explores the lives of three wheelchair-users—Galen Buckwalter, Vicki Elman, and Ernie Wallengren—weaving their stories into a powerful narrative of life in a wheelchair.
Each One is Different
Each medical history is different: Elman has multiple sclerosis; Wallengren had ALS (he later died in 2003, at 50 years of age); and Buckwalter was left paralyzed from the neck down after a swimming accident as a teen. But as Rolling vividly portrays, to encounter them merely as “patients” obscures the complex and perhaps unexpected ways their lives are shaped by illness.
The film’s success in this regard owes to its cinematic technique—almost all the material is filmed by Elman, Wallengren, and Buckwalter. At the beginning of the project, Dr. Berland handed them each small video cameras to record what they felt were the important aspects of their medical care. To do so is no small gesture. “When you give the camera to someone else,” Berland explains in an interview, “it really shifts the power...they controlled what they chose to show us.” What emerges is, to use the phrase of anthropologist Clifford Geertz, a “thick description” of life in a wheelchair for three individuals.
In one scene, Vicki Elman’s wheelchair breaks down in front of her house. The van driver has refused to help her into her house, citing company liability issues. The magnitude of this situation becomes apparent: with no cell phone reception, she is stranded in her driveway indefinitely. It is a profound if everyday example of how Elman’s ‘health outcomes’ are shaped in unexpected ways. The camera bears witness as she turns the lens on herself, quietly sobs and says, “I guess I will spend the night here.” Fortunately (this time), a neighbor happens to pass by later that evening and helps Elman into her home. But what is captured on film is a compelling, moving portrayal that begins to unpack what the “patient experience” is.
This is brought into painful relief as Elman discusses the problematic wheelchair with her physician, a moment captured on film. Though the physician may not have been ill intentioned, he clearly fails to grasp the importance of a functional, dependable wheelchair to Elman’s dignity and quality of life. This missed opportunity is one of many scenes that illustrate the insight into experiences of disability that might be otherwise missed. Indeed, Dr. Berland sees her work as a form of qualitative research, influenced by disciplines including anthropology and narrative medicine
Rolling is not the first time Berland has worked with visual media. Before a career in medicine, she spent five years in public television, making documentaries for NOVA and working for the MacNeil/Lehrer NewsHour program.
While a medical student on her psychiatry rotation at Oregon Health Sciences University, she explored the lives of teenagers in a juvenile justice center, giving them video cameras to capture stories that “were never in the chart.”
Later, as a resident at Washington University at St. Louis, she gave cameras to her colleagues to capture what happened while they were on call. The resulting film, Cross-Over, captured the transformative process of residents becoming doctors; it has since been used in many residency programs as a way to initiate discussion about the transition from student to house staff.
In recognition of the importance and relevance of her documentary film research, Dr. Berland was recently recipient of a MacArthur Fellowship.
Her current research projects also involve using cameras as a “data collection tool.” One explores health care delivery in emergent and trauma settings, and another will document the experience of patients in the run down manufactory town of Waterbury, CT, as they leave hospitals and re-enter their community.
Rolling is available online for viewing at WNET’s website.