By Gretchen Berland, M.D., in the New England Journal of Medicine. Access to this article is free.

Berland is a documentary-filmmaker-turned-internist as well as an assistant professor of medicine at Yale University School of Medicine. She recently completed a lengthy project that culminated in the film “Rolling,” documenting the lives of three people in wheelchairs in Los Angeles. Berland gave her subjects videocameras with which to explore the activities, thoughts and perspectives of their daily lives, and compiled more than 200 hours of material into a single narrative.

An excerpt from her account of the project:

The participants filmed events related to their passions: basketball, camping, disability rights, music …

Moments of extraordinary frustration were also recorded, a scene captured by [Vicki] Elman being a striking example. After 20 years of living with multiple sclerosis, Elman required a power wheelchair. One afternoon, her regular public-transportation service picked her up from an event, and during the ride home, her wheelchair stalled inside the van. Although it’s officially against the rules, most riders say that a driver will sometimes bring them into their homes. That day, however, Elman wasn’t so lucky. The driver parked her 10 feet from her front door, where she stayed and waited. But she had brought the video camera.

The first time I screened this tape, I was horrified. I watched Elman try to call for help on a cell phone that had no signal. I watched her wait for a car to drive by, hoping that someone would stop and help. I watched as the afternoon light faded in the background.

I wish the indignity Elman suffered that day was an isolated event, owing to one overworked bus driver. Yet the material she and [Galen] Buckwalter recorded suggests otherwise. Their filmed interactions with the health care system, including telephone calls with insurance companies, visits with physicians, and exchanges with nursing aides, reveal a culture that can be both naively ignorant and, sometimes, dangerously neglectful.

… Perhaps what was filmed can largely be ascribed to our dysfunctional health care system. Our visits with our patients are often limited to 15 minutes. Few of us receive formal training in caring for disabled persons. But at what point do we take ownership for the segments of the health care arena in which we participate?

… Recent work on the quality of care calls for creating a patient-centered health care system. But in order for it to be patient-centered, don’t we need to understand patients’ perspectives?

The site includes access to videos and an audio interview. NEJM also features a first-person piece by one of the participants: “The Good Patient,” by J. Galen Buckwalter, Ph.D.

This entry was posted on Wednesday, December 19th, 2007 at 6:24 pm and is filed under ALS, NOT2BEMISSED, disabilities, first-person, health care, multiple sclerosis, personal stories, wheelchair. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post