NLPhilia Blog

Dr. Gretchen Berland, M.D., has been doing some marvelous research with disabled people. She mounts video cameras on their wheelchairs so as to get their own perspectives on their lives. From the New England Journal of Medicine:

Moments of extraordinary frustration were also recorded, a scene captured by [patient 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 ft 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 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.

Follow this link: Full article, video samples, and more information.